That's Holden-speak for "school". When we turn down the road that his school is on, I always ask him "are you ready to go to school?" So this morning, in the same place I usually ask - he beat me to it. He said "koooooool", and smiled. Spontaneous!
When we dropped of Zoe at "kooool", he said "bye-bye sissy".
Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.
He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.
He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).
More later.
12.12.2008
12.05.2008
DTaP
I haven't had time to post much lately, but will update this weekend on Holden's progress. Things are good though for the most part. Moving along, slowly but surely.
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
11.21.2008
I think I love Holden's School
But, I'm afraid to say it out loud for fear of jinxing it!!!
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
10.29.2008
Doctor Visit
Today, Holden saw Dr. Rao for the first time. I spoke to the doctor last week about Holden's case, and today was his first visit. Aside from having to wait F-O-R-E-V-E-R, it went well. We discussed continuing chelation but are going to wait until we receive the lab results back. They did bloodwork today, and also an IV push of glutathione, NAC, and Vit C. He tolerated it really well - I was so proud of him! He cried, but once she got the needle in, he just sat and watched and ate his cookies. I have to send off an OAT test to check for yeast, a Neurotransmitter test, and the French test. Our next appointment is the 1st week of December. We'll discuss the results of everything and start chelating again. I'm anxious to get started again. We just finished another 2 months using EDTA suppositories about 2 weeks ago. I can always tell a difference in his attention, focus, eye contact, etc...when we're chelating. Then we stop, and it seems to all go away again. It's like the universe is playing some sick game with us. But, I know in time - we'll have him back to STAY.
He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!
So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.
More later....
He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!
So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.
More later....
10.12.2008
in like flynn
FINALLY. We have a house. We've been living with my brother-in-law, his wife, and their 6 month old for 2 months. And the house we lived in ... not so big. So, yeah, 4 adults and 4 kids, enough to drive you nutty! We found a place about 5 miles away and moved in this weekend. We don't have furniture yet, as we sold every thing we had before we left Florida. I found a couch on craigslist for $75, sleeper sofa. For now, it's me, Zoe and Jackson on the sleeper sofa. Dietrich and Holden in the bedroom on a cot-like pad on the floor. It sucks, yo. But, not near as much as it sucked trying to live in someone else's house with kids!
Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!
Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.
With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.
Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!
Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.
With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.
10.02.2008
school
I have to take a minute and brag about Zoe, first. She got her progress report today - which is the 1/2 way mark to her 1st report card. She has 5 A's, and 1 B!! I'm SO proud of her. Grades like that after a move like we've done recently, staying with family, her sleeping on the floor in a sleeping bag for 2 months, and dealing with her little brothers in the same room! I think we can all learn from her.
Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.
Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.
9.23.2008
head, shoulders, knees and toes
Holden's finally settling in after the move. He's doing great, actually. I always hesitate to say "great", because I know by now that these "great" episodes are usually followed by a regression at some point. But, for now, I'll take it and relish in it!
He seems to be talking more. He has some spontaneous language now. He will come to me and say "joo" for juice. Or "cookie" for ... well, cookie. He will tell/ask me to "o-pen" things for him. He'll try his best to say "fly" when he wants us to "fly" him in the air. I can tell him we're going bye bye and turn off the TV and there's no tantrum. He will get his shoes (almost always independently), put them on and go to the door. He's repeating EVERYTHING he's asked to now. In therapy, and at home.
He loves loves loves to sing. I'll catch him doing the hand motions and singing Twinkle Twinkle Little Star a lot. The only thing that's really understandable is "twinkle", but I know he's singing it. I taught him Head, Shoulders, Knees and Toes last weekend. I sang it 3 times and then he started doing the motions with him. Now he'll say "head", "knees", "toes"...but he's not so good yet with "shoulders".
Body parts - he can/will now identify on command: head, nose, ear, mouth, tummy ("tum-tum" as he puts it), and toes.
When I ask him at night if he wants me to rock him to sleep, he'll look at me - smile, and say "rock".
When we pick up Zoe from school, he will smile the biggest smile and say "HI!!!" to her. She just loves this, of course.
He's bringing me things. Which may not sound all that impressive. But, he's never brought me anything...except maybe the remote. He'll bring me his juice cup and take my hand, look me in the eyes, smile, and say his version of "thank you", and hand it to me. I just smile and say Thank you! back and he'll go get a block, or toy, or whatever else he can find to bring to me. Which is great that he's enjoying the social interaction with me.
And the biggest, most impressive accomplishment over the last month...he'll now kick a soccer ball! Independently, for the most part. Dietrich's been taking him to the soccer field nearby and we used a little ABA type reinforcement to get him started. He loves to be thrown in the air...so, we would tell him to kick the ball and sometimes help him do it, and then Dietrich would pick him up and throw him hight in the air. We've faded out the reinforcer and he will just kick the ball now...and have fun doing it! This is really cool to see, since it's something we worked on a year ago and didn't get anywhere. At all.
He's discovered his reflection. In everything. Store windows, ovens, toasters, etc. etc. etc. Because he's such a visual kid, it can be pretty distracting for him. So we're working on that. The paper shredding has diminished a lot lately, but he continues to flip through the yellow pages of the phone book a lot. I just tell everyone that he's memorizing it for me so I don't have to go online and look up numbers all the time.
He seems to be talking more. He has some spontaneous language now. He will come to me and say "joo" for juice. Or "cookie" for ... well, cookie. He will tell/ask me to "o-pen" things for him. He'll try his best to say "fly" when he wants us to "fly" him in the air. I can tell him we're going bye bye and turn off the TV and there's no tantrum. He will get his shoes (almost always independently), put them on and go to the door. He's repeating EVERYTHING he's asked to now. In therapy, and at home.
He loves loves loves to sing. I'll catch him doing the hand motions and singing Twinkle Twinkle Little Star a lot. The only thing that's really understandable is "twinkle", but I know he's singing it. I taught him Head, Shoulders, Knees and Toes last weekend. I sang it 3 times and then he started doing the motions with him. Now he'll say "head", "knees", "toes"...but he's not so good yet with "shoulders".
Body parts - he can/will now identify on command: head, nose, ear, mouth, tummy ("tum-tum" as he puts it), and toes.
When I ask him at night if he wants me to rock him to sleep, he'll look at me - smile, and say "rock".
When we pick up Zoe from school, he will smile the biggest smile and say "HI!!!" to her. She just loves this, of course.
He's bringing me things. Which may not sound all that impressive. But, he's never brought me anything...except maybe the remote. He'll bring me his juice cup and take my hand, look me in the eyes, smile, and say his version of "thank you", and hand it to me. I just smile and say Thank you! back and he'll go get a block, or toy, or whatever else he can find to bring to me. Which is great that he's enjoying the social interaction with me.
And the biggest, most impressive accomplishment over the last month...he'll now kick a soccer ball! Independently, for the most part. Dietrich's been taking him to the soccer field nearby and we used a little ABA type reinforcement to get him started. He loves to be thrown in the air...so, we would tell him to kick the ball and sometimes help him do it, and then Dietrich would pick him up and throw him hight in the air. We've faded out the reinforcer and he will just kick the ball now...and have fun doing it! This is really cool to see, since it's something we worked on a year ago and didn't get anywhere. At all.
He's discovered his reflection. In everything. Store windows, ovens, toasters, etc. etc. etc. Because he's such a visual kid, it can be pretty distracting for him. So we're working on that. The paper shredding has diminished a lot lately, but he continues to flip through the yellow pages of the phone book a lot. I just tell everyone that he's memorizing it for me so I don't have to go online and look up numbers all the time.
8.15.2008
it's been a long time!
I haven't been able to post much. We moved the weekend of August 1st. We're now in Carrollton, Texas (DFW area). Staying with my brother-in-law and his family, so getting online is pretty scarce for me right now. Hoping and praying with all I have that we can get into our own place soon. But, for now, we'll deal.
Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.
Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.
The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.
We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.
We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:
During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.
So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.
More later!
Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.
Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.
The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.
We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.
We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:
During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.
So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.
More later!
7.20.2008
challenge test
We're done with the first 2 months of chelation. So, yesterday, we did a challenge test. We haven't done one of those in about 3 months. We used a 750 mg. EDTA suppository. I had forgotten how hard the challenge tests are on him. For the first 3-4 hours after I gave him the suppository, he wanted to do nothing but sleep. You could tell he just felt horrible. His little cheeks were red and flushed. He wasn't interested in anything, really. Just wanted to lay down, or be held and rocked.
BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.
We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.
You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.
BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.
We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.
You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.
notes from therapy
Friday's notes:
Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.
Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.
Inappropriate behaviors:
None!
Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.
Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.
Inappropriate behaviors:
None!
7.14.2008
one day at a time
I have always been a worrier. I worry about everything under the sun. Most of the time, I worry about things that haven't even happened yet. I worry about things that "could" possibly happen. I worry about the future.
One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!
Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.
I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.
Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...
And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.
One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!
Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.
I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.
Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...
And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.
6.25.2008
marathon
I was talking to another mom today at therapy. She was telling me that during the first 3 months of her son's chelation, she wasn't sure she was doing the right thing. She said he had some behaviors he wasn't having prior to chelation, and that other behaviors that he previously had, actually got worse. Now that she's 6 months into chelation, she's glad she stuck with it as he's making great progress and she's excited about the possibility of his "recovery".
Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.
We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.
For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.
It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.
Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.
We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.
For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.
It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.
6.20.2008
not just good, but a GREAT day (so far)
Holden had been a bit whiney and just kind of "spacey" last week. I always know that once he goes through something like that, he always comes out on the other side with improvements. It's just waiting through the low times that gets to me. Yesterday, my mom showed up for a few days to stay with us. He hasn't seen her in a month or so. When she walked in, he went straight up to her, hugged her and sat in her lap for at least 10 minutes. Just hugging and loving and kissing her. Today in ABA, his therapists were SO happy with him. He was asking independently for raisins, to "sing", to be bounced on a bouncy ball, to be tickled, etc. Also, 2 of his therapists were having a conversation while he was watching a movie and one said to the other "his shoes (he had on crocks) are on backwards". They both kept talking about his program and she said the next thing she knew, he was taking off both shoes - switched them to the right feet - and then put them back on. Crazy. Apparently not only did he hear them, but he comprehended what they were saying too.
He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:
We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!
He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:
We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!
6.13.2008
Wii
We love the Wii in our house. Especially Zoe. Anyway, yesterday, Zoe and one of her friends were doing Wii Fit. They were doing Yoga poses, and I looked up to see Holden looking at her, then the tv, then her, and smiling. Then he started trying to do the pose, too. Gross motor imitation, yay!!!
I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.
He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...
Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.
I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.
He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...
Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.
6.05.2008
life
I can't believe it's been a month since I've posted. Sometimes I don't know where the time goes. Really.
Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.
Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.
Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.
They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.
I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.
More later!
Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.
Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.
Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.
They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.
I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.
More later!
5.09.2008
aaaand more slacking
I can't believe it's been as long as it has since I've updated. Sometimes my days get away from me and before I know it, it's time for bed and to get up and start it another day all over again.
We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.
Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.
As for how he's doing, he's been doing great actually. Here's a recent note from therapy:
- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.
So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".
The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.
We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.
Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.
As for how he's doing, he's been doing great actually. Here's a recent note from therapy:
- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.
So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".
The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.
4.25.2008
slacker
I've been slacking lately, keeping up on things here. Actually, I've just been busy as hell. Dietrich's been traveling NONSTOP for the past few weeks with work and I've been trying to be a single parent and it just sucks.
So, here's an update on everything:
After a horrible week last week, Holden's been WONDERFUL this week. I don't know what brought about the change. The only things I've done different - I backed off of the Taurine, and I did a DMSA suppository challenge test on Sunday. But, as it always seems, anything he has a period of regression, he always comes out of it better than before he went into it. One of the pieces of the puzzle I guess. His therapist said today that he's done great all week. He even initiated play today for the 1st 15 minutes of his session. He went into the ballpit room and played and worked in there without any problems or wanting to leave that room for 15 minutes. She said he also initiated going into another room (he has problems with transitioning from 1 room to another at the clinic) by going up to a door and saying "open". When I got there to pick him up, he looked at me and said "pee". He kept saying it over and over and then laid on the floor. He's done that twice this week at home and it didn't occur to me that he would know he needs a diaper change. But, after it happening again today, I'm convinced he's telling us he needs a diaper change! He's also looking into my eyes a lot this week. Almost as if he's really studying me. Doesn't make sense, I know, but he's really looking at me. So, it's been a good week for Holden.
I took Zoe to the GI doctor on Wednesday. She's still having episodes of nausea / vomiting. The last 2 episodes (last Friday and today) have just been nausea, thankfully. The doctor brought up Cyclical Vomiting Syndrome. She said the only way to diagnose it is to rule out EVERYTHING else. So, we're having an MRI done today (as we speak, her dad took her) to make sure nothing's going on neurologically. She has loads of bloodwork that we need to do and stool samples and urine tests, and I have to schedule an upper GI. Once all those are complete, whenever that is, we'll have a more clear picture of what's causing it. She's such a trooper though, even when she's sick.
Jackson's becoming quite the little person. He's smiling and laughing and trying really hard to walk. He also says "mama" and "dada". More "dada" than anything else at this point. He's feeding himself little cookies that I break off into small pieces. Crazy how fast they grow up.
As far as our move to Dallas, we should know something by this time next week. Dietrich's final interview / presentation is on Monday. The other person that's up for the job has theirs on Tuesday, so they want to make a decision by Wednesday. Either way, we know that whatever is meant to happen ... will.
So, here's an update on everything:
After a horrible week last week, Holden's been WONDERFUL this week. I don't know what brought about the change. The only things I've done different - I backed off of the Taurine, and I did a DMSA suppository challenge test on Sunday. But, as it always seems, anything he has a period of regression, he always comes out of it better than before he went into it. One of the pieces of the puzzle I guess. His therapist said today that he's done great all week. He even initiated play today for the 1st 15 minutes of his session. He went into the ballpit room and played and worked in there without any problems or wanting to leave that room for 15 minutes. She said he also initiated going into another room (he has problems with transitioning from 1 room to another at the clinic) by going up to a door and saying "open". When I got there to pick him up, he looked at me and said "pee". He kept saying it over and over and then laid on the floor. He's done that twice this week at home and it didn't occur to me that he would know he needs a diaper change. But, after it happening again today, I'm convinced he's telling us he needs a diaper change! He's also looking into my eyes a lot this week. Almost as if he's really studying me. Doesn't make sense, I know, but he's really looking at me. So, it's been a good week for Holden.
I took Zoe to the GI doctor on Wednesday. She's still having episodes of nausea / vomiting. The last 2 episodes (last Friday and today) have just been nausea, thankfully. The doctor brought up Cyclical Vomiting Syndrome. She said the only way to diagnose it is to rule out EVERYTHING else. So, we're having an MRI done today (as we speak, her dad took her) to make sure nothing's going on neurologically. She has loads of bloodwork that we need to do and stool samples and urine tests, and I have to schedule an upper GI. Once all those are complete, whenever that is, we'll have a more clear picture of what's causing it. She's such a trooper though, even when she's sick.
Jackson's becoming quite the little person. He's smiling and laughing and trying really hard to walk. He also says "mama" and "dada". More "dada" than anything else at this point. He's feeding himself little cookies that I break off into small pieces. Crazy how fast they grow up.
As far as our move to Dallas, we should know something by this time next week. Dietrich's final interview / presentation is on Monday. The other person that's up for the job has theirs on Tuesday, so they want to make a decision by Wednesday. Either way, we know that whatever is meant to happen ... will.
4.17.2008
TGIF?
I hope Friday is better than Monday, Tuesday, Wednesday and Thursday were this week. Holden is out of sorts. He's screaming and crying at ABA. He's having MAJOR issues with transitions there. Changing therapists or even rooms, he's having meltdowns. He's stimming like crazy. Today, it was walking past the TV (looking at the different angles) down the wall of the playroom, and back. Over and over and over again. Drives me insane. Still mouthing everything. Chewing the binkies that he has left. Chewing on his shirt all the time.
God, please let this be a phase that will go away soon. The last things I've started are the Minerals and Taurine. Going to talk to Dr. Berger about that and see if either could make such a difference?!
On a "lighter" note (not really, but still), we got the DMPS and EDTA challenge results back. DMPS wasn't impressive - did pull some metals. Lead being the highest, but not elevated. Did pull some mercury, but again, not a lot. The EDTA challenge test pulled both lead and mercury in the orange. From what I've heard, EDTA is notorious for pulling lead ... but not mercury. So, that's good news. I have one more challenge (DMSA) and will do that this Saturday. Our next DAN appointment is May 1st and we'll go over all the challenge tests and decide which chelation agent to use.
So, anyway, please let me be thinking TGIF tomorrow morning!
God, please let this be a phase that will go away soon. The last things I've started are the Minerals and Taurine. Going to talk to Dr. Berger about that and see if either could make such a difference?!
On a "lighter" note (not really, but still), we got the DMPS and EDTA challenge results back. DMPS wasn't impressive - did pull some metals. Lead being the highest, but not elevated. Did pull some mercury, but again, not a lot. The EDTA challenge test pulled both lead and mercury in the orange. From what I've heard, EDTA is notorious for pulling lead ... but not mercury. So, that's good news. I have one more challenge (DMSA) and will do that this Saturday. Our next DAN appointment is May 1st and we'll go over all the challenge tests and decide which chelation agent to use.
So, anyway, please let me be thinking TGIF tomorrow morning!
4.14.2008
great weekend, but now - wtf?
We had a great weekend. My mom came over to stay with us. Saturday, we took the kids to a new place in town called Bounce. It's really just a place for kids with sensory issues. The kids loved it. Then, we went to the circus. Kids loved that, too. Sunday, we went to IKEA. Kids didn't love that as much as the adults did. Holden was very cuddly and loving and even reminded me of a "typical" kid most of the weekend. He even wanted attention from my mom while she was here - and normally he could take it or leave it. He really did great, all around. Much better than he has been in recent weeks.
Last night though, it was hard to get him settled down. Once he went to sleep, we took him up to bed and he was okay until around 11pm. Then it was up and down and up and down. He was just really whiney. He had a wet diaper (and bed, and clothes) at around 5am so I had to get him up. He had a meltdown (I would, too, if someone took all my clothes off and woke me up), so Dietrich took him into his room and laid him on the bed. He watched TV until I went up to get him at 7am. He had ABA this morning and he just had a really hard time. His vocals were off, his crying was pretty much non-stop. He just had a tough time this morning.
I'm thinking it's the lack of sleep. He normally sleeps anywhere from 10-13 hours a night, and last night, he got maybe 6-7 hours. I'll watch him and if his behavior doesn't improve in 2 days or so, I'll call Dr. Berger to see what he can suggest. God I hope it gets better soon!
Last night though, it was hard to get him settled down. Once he went to sleep, we took him up to bed and he was okay until around 11pm. Then it was up and down and up and down. He was just really whiney. He had a wet diaper (and bed, and clothes) at around 5am so I had to get him up. He had a meltdown (I would, too, if someone took all my clothes off and woke me up), so Dietrich took him into his room and laid him on the bed. He watched TV until I went up to get him at 7am. He had ABA this morning and he just had a really hard time. His vocals were off, his crying was pretty much non-stop. He just had a tough time this morning.
I'm thinking it's the lack of sleep. He normally sleeps anywhere from 10-13 hours a night, and last night, he got maybe 6-7 hours. I'll watch him and if his behavior doesn't improve in 2 days or so, I'll call Dr. Berger to see what he can suggest. God I hope it gets better soon!
4.10.2008
4.02.2008
no. really?????
Could it be true?? Let's hope so!
AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY
For release: APRIL 1, 2008
AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org
CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.
Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.
“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.
The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.
“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”
“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”
For more information about autism, visit www.aap.org.
The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.
The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)
AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY
For release: APRIL 1, 2008
AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org
CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.
Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.
“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.
The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.
“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”
“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”
For more information about autism, visit www.aap.org.
The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.
The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)
3.31.2008
true joy
Today Holden was at the clinic for ABA. I usually drop him off and run errands and come back 2 hours later to pick him up. Sometimes I stay in the waiting room, sometimes I go back and watch so that I can learn. Today, I went in to pick him up about 15 minutes early and sat in the waiting room. He came out the door in the little flintstone car he likes so much and I didn't say anything. I wanted to see if he would notice me. He did more than notice me. He turned and saw me...smiled with those dimples of his, got out of the car, said "mama!!" and came over to give me a hug. I can't even begin to describe the way it felt. You wait so long, and then one day it happens. You finally know that he realizes you are mama. And he loves me. I could see it on his face and how excited he was to see me. I'll never stop fighting to bring him back to us.
good day!
The new yeast medicine (Sporanox) must be working. Holden's having a great day today. A far cry from the past 2 weeks. Not even ONE tear or tantrum this morning at Quest. No problems transitioning from outside to the therapy room. His therapist said he did great. Notes from therapy this morning:
-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.
-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).
yay!!!!!
-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.
-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).
yay!!!!!
3.30.2008
holden
I spoke to Dr. David last Thursday evening. We're switching Holden from Diflucan to Sporanox. I think the yeast is giving him a tough time. He's still extremely stimmy, unfocused, and hyper. His hand is down his diaper constantly. Dr. David said to expect a tough weekend, due to dieoff, if the new anti-fungal works. Boy he wasn't kidding. Holden was up last night until 10:30, when he finally fell over and went to sleep. He was a little maniac, extremely hyper. I even tried activated charcoal and he was STILL all over the place. A little less hyperactivity, but still going nonetheless. We'll see what today holds in store for us.
I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.
We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.
He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.
I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.
We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.
He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.
zoe
Her EEG came back normal. She hasn't had another 'episode' since the last one almost 2 weeks ago. Maybe it was a fluke?? I hope so. She's on Spring Break this week, so she gets a well needed and deserved break!
3.23.2008
a lot going on
Since my last post, Holden has had his 2nd IV DMPS session. He seems to be tolerating it well, I think. Some things we've noticed that he also did after the 1st IV - his appetite seems to decrease for a few days (which is not normal for him), he's a bit spacey, and he's very stimmy. Once all of this cleared up last time, he made some good progress and started doing things we'd never seen him do before. Good things. So, we'll see how the next few days go.
I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.
I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.
3.10.2008
speaking of roller coasters
You know how I said autism is a roller coaster ride? Well, here we go again. I posted that last night on here. This morning, we went to ABA. I sat in on the program today because I wanted to see how he was doing. His therapist told me that they were going to be changing his programs/goals, because he's mastered most of what they started with just a few months ago. And he's moving so fast with the echoics, they need to create a new program. Now THAT'S the kind of roller coaster ride I like!!!!!
3.09.2008
regression
I hesitate to title this post "regression". Holden's doing great still, esp. with the verbal imitation. He will pretty much at least TRY to say whatever you tell him to. It's clear that it's just not easy for him to get the words out - he will make a sound, and it's also clear that he thinks he's saying what you told him to say.
The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.
At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.
I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.
So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.
Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.
Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.
The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.
At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.
I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.
So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.
Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.
Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.
3.03.2008
2.26.2008
real imitation - verbal
You know, looking back about a month or 2 ago, I think I was just really hopeful. Holden would occassionally imitate a sound, or would just come out with more sounds on his own. I thought to myself ... "he's improving, he's really improving!". But, today it just a whole other level. This morning in ABA, they told me he was more verbal than he's ever been. They were able to get a number of echoics from him. Not just 1 or 2, but like 4 or 5, which is huge. So, then he had speech and she hasn't seen him in over a week. She commented on how she couldn't believe the difference in just a week.
And it's true. It's crazy. Now, I can with-hold things like his drink (cup), his binkie (bee-bee), and anything else I want and ask him to say something and he does! For the most part anyway. For example:
me: "say mama"
Holden: "maaa-maaa"
me: "holden, say ba-ba"
Holden: "ba-ba"
me: "holden, say eeeeeat"
Holden: "eeeat!"
He's also doing a lot more gross motor imitation. Things he hasn't been shown before. When I ask him to show me his ear (they've been working on head and nose), it takes him a minute, but then he points to his ear.
I don't know what it is. As usual, it could be a combo of things. I honestly think that the chelation IV we did in January got the ball rolling. Then, I stated TMG about 2 weeks ago and I'm just now up to the therapeautic dose. I think that has got to be what's kickstarted his speech as much as it has.
To see improvements like this ... real progress. I can't tell you how good it feels. I'm crossing my fingers and toes and hairs that it will just continue.
And it's true. It's crazy. Now, I can with-hold things like his drink (cup), his binkie (bee-bee), and anything else I want and ask him to say something and he does! For the most part anyway. For example:
me: "say mama"
Holden: "maaa-maaa"
me: "holden, say ba-ba"
Holden: "ba-ba"
me: "holden, say eeeeeat"
Holden: "eeeat!"
He's also doing a lot more gross motor imitation. Things he hasn't been shown before. When I ask him to show me his ear (they've been working on head and nose), it takes him a minute, but then he points to his ear.
I don't know what it is. As usual, it could be a combo of things. I honestly think that the chelation IV we did in January got the ball rolling. Then, I stated TMG about 2 weeks ago and I'm just now up to the therapeautic dose. I think that has got to be what's kickstarted his speech as much as it has.
To see improvements like this ... real progress. I can't tell you how good it feels. I'm crossing my fingers and toes and hairs that it will just continue.
2.20.2008
"Cup"
Holden was sitting on my lap last night before bedtime. I had his sippy cup in my hand:
Holden: "cup"
Me: "Yes!!! CUP!!" I handed it to him.
Holden: "cup"
This morning while waiting for his therapist, he went to grab his sippy cup out of his bag and I stopped him. I looked at him with it in my hand and said "cup". He looked at me in the eye and said "cup", with a huge grin on his face. Of course, I gave him the cup!
So far, with the Baby Bumblebee video, he says:
"cup" (obviously)
"cow"
"car"
"ball"
"baaa" for bottle
Holden: "cup"
Me: "Yes!!! CUP!!" I handed it to him.
Holden: "cup"
This morning while waiting for his therapist, he went to grab his sippy cup out of his bag and I stopped him. I looked at him with it in my hand and said "cup". He looked at me in the eye and said "cup", with a huge grin on his face. Of course, I gave him the cup!
So far, with the Baby Bumblebee video, he says:
"cup" (obviously)
"cow"
"car"
"ball"
"baaa" for bottle
2.14.2008
starting TMG
I heard about DMG and TMG from a friend of mine. She said she's talked to a lot of other parents and kids have seen great improvements by starting one of these. TMG is DMG with an extra methyl group added. Or, that's how I understand it anyway. Some kids have seen good progress with speech and since speech is going very slow with Holden, I decided to ask Dr. David if we could try it. He emailed me back with the doseage info and we started 2 days ago. Apparently the therapuetic dose is around 1000-2000mgs per day. I bought the 175mgs. capsules to start him because we like to start things slow. I'm starting with 1/2 cap twice a day for 3 days. Then increasing by 1 capsule every 3 days, until we reach about 1000mgs. per day.
As with everything and autism, it's a crap shoot. What works for some kids doesn't work for others. What doesn't work for other kids works for yours. If I don't see any improvement at all on the TMG, I'll stop it. So far, he's up to taking:
-Vitamin C
-Calcium
-L-Carnosine
-NuThera Multivitamin
-Folinic Acid
-MB12 shots
-Nystatin
-Cod Liver Oil
-Licorice Root
-TMG
-Factor 4 probiotics
-Epsom salt baths every night
-Glutathione cream
And, almost all of those have to be given twice a day. So, the poor kid has nothing to eat or drink without having some sort of supplement in it. He's good though - doesn't bat an eye. He proably would if I didn't put anything in his juice! He's think it doesn't taste "right" by now. Ha.
As far as progress, he's doing well. He's babbling more. Trying so hard to talk. He has developed a sensitivity to loud sounds. He never had this before, so I don't know if it's a problem, or if it's a good thing in that he's becoming more aware of his surroundings, instead of being in his own little world. I can't run the blender or vaccum without a freak out/crying session. He calms down immediately when it's over though. And he doesn't cover his ears, he just cries. Like he's scared. He's even a little "iffy" when the microwave's on. I'm going to discuss with Dr. David next week when we meet with him to discuss chelation. Our appointment is on the 20th.
As with everything and autism, it's a crap shoot. What works for some kids doesn't work for others. What doesn't work for other kids works for yours. If I don't see any improvement at all on the TMG, I'll stop it. So far, he's up to taking:
-Vitamin C
-Calcium
-L-Carnosine
-NuThera Multivitamin
-Folinic Acid
-MB12 shots
-Nystatin
-Cod Liver Oil
-Licorice Root
-TMG
-Factor 4 probiotics
-Epsom salt baths every night
-Glutathione cream
And, almost all of those have to be given twice a day. So, the poor kid has nothing to eat or drink without having some sort of supplement in it. He's good though - doesn't bat an eye. He proably would if I didn't put anything in his juice! He's think it doesn't taste "right" by now. Ha.
As far as progress, he's doing well. He's babbling more. Trying so hard to talk. He has developed a sensitivity to loud sounds. He never had this before, so I don't know if it's a problem, or if it's a good thing in that he's becoming more aware of his surroundings, instead of being in his own little world. I can't run the blender or vaccum without a freak out/crying session. He calms down immediately when it's over though. And he doesn't cover his ears, he just cries. Like he's scared. He's even a little "iffy" when the microwave's on. I'm going to discuss with Dr. David next week when we meet with him to discuss chelation. Our appointment is on the 20th.
2.05.2008
IV chelation challege results
We got Holden's results back yesterday from the IV chelation challenge we did a few weeks ago. The pretest (which is urine collected randomly) showed low levels of lead, and no mercury at all. There were other things, but lead and mercury are the ones I looked at. The post test (which is the urine collected for 8 hours after the IV chelation) showed lead levels "high", and showed mercury. The mercury wasn't "high", but it was there, and it was on the higher end of "within normal limits".
So, I'm not doctor, but I'm assuming this means on his own, he's not excreting toxins on his own - or at least not as much as he should or could. Whereas, the chelator has helped him excrete high levels of lead and also some mercury. Our appointment with Dr. David isn't until the 20th and we'll discuss ongoing chelation at that time. I'm hoping to start him on suppositories soon, and do 1 IV per month. Hopefully this will pan out and we'll start to see continued improvement.
I don't know if it's just me, or if it's reality, but since this 1 IV we did, I've seen improvements. Who knows, maybe it's just everything kicking in and has nothing to do with his body getting rid of some of the metals. Or maybe it does have something to do with it. In this game, you never know. It's always a guess. Whatever it is, I'll take it.
So, I'm not doctor, but I'm assuming this means on his own, he's not excreting toxins on his own - or at least not as much as he should or could. Whereas, the chelator has helped him excrete high levels of lead and also some mercury. Our appointment with Dr. David isn't until the 20th and we'll discuss ongoing chelation at that time. I'm hoping to start him on suppositories soon, and do 1 IV per month. Hopefully this will pan out and we'll start to see continued improvement.
I don't know if it's just me, or if it's reality, but since this 1 IV we did, I've seen improvements. Who knows, maybe it's just everything kicking in and has nothing to do with his body getting rid of some of the metals. Or maybe it does have something to do with it. In this game, you never know. It's always a guess. Whatever it is, I'll take it.
meow
In our continued effort to get Holden to imitate, something posessed me to make the "kitty-cat" sound the other day in the car. Boy did that get his attention. So, now, about 20 times a day, it goes something like this: "Holden, what does the kitty-cat say?". Pause. I say "meeeeeyoow". He looks at me, opens my mouth, watches me say it again, and then says "owwwwwww". There you have it, imitation.
We're also working on ducks (quack, quack, quack), and cows (moooooo). We'll see how long that takes.
We're also working on ducks (quack, quack, quack), and cows (moooooo). We'll see how long that takes.
1.29.2008
repeating
Not everything, mind you. Not even close to everything. BUT, he IS repeating some things on TV. Mostly on the Baby Einstein DVDs, which I thought were really some type of devil-spawned DVD collection because they became such an obsession with him early on. But, if they're going to help him get some words out, then so be it. So far today, I've heard "kitchen", "chair", and "ball". And, while watching Baby DaVinci, he imitated sounds that the puppets were making. They were yawning, and he does it right after them. Everytime. So it's NOT a fluke.
As painful for me as that IV was 12 days ago - I'm ready for another!
As painful for me as that IV was 12 days ago - I'm ready for another!
1.26.2008
what's going on???
I have no idea, but I'm not changing anything. I don't know if it was the IV chelation from last Thursday, or if things are just starting to "click" for Holden. He had a great week, doing things I haven't seen him do before. His ABA therapists all said he's making a lot more sounds. Not noises, but actual sounds. 3 days in a row, I caught him imitating things from TV. He was watching Barney once (I know, I know) and I caught him out of the corner of my eye doing something with his feet. I thought "oh, its just one of his dances he's doing". Then I looked at the TV and saw the kids dancing, doing exactly what Holden was doing. They started swinging their arms around and he watched and did the same thing...again. Just yesterday, he was watching a Baby Einstein video and there was a windup toy on there that would jump...walk, then jump again. Holden stood in front of the TV and jumpped every time the toy did. And smiled. I also heard some verbal imitation while he was watching a video, too.
Gross motor imitation is what we've been focusing on in ABA for him. It seems to facilitate verbal imitation. He's done GMI on occassion, but most of the time, its been prompted. This week, the times I caught him doing it, it was NOT prompted at all. Completely independent. I wish I would've had a video camera when he was doing it ... but I hadn't expected it, so I wasn't prepared.
Was it a fluke? Maybe. But I don't think so. Was it due to the little bit of detox that the one IV chelation would have accomplished? Possibly. Or, is it because he's started ABA thearpy 4 days a week this past week? Could be. Whatever the reason, I'm not stopping any of it.
Gross motor imitation is what we've been focusing on in ABA for him. It seems to facilitate verbal imitation. He's done GMI on occassion, but most of the time, its been prompted. This week, the times I caught him doing it, it was NOT prompted at all. Completely independent. I wish I would've had a video camera when he was doing it ... but I hadn't expected it, so I wasn't prepared.
Was it a fluke? Maybe. But I don't think so. Was it due to the little bit of detox that the one IV chelation would have accomplished? Possibly. Or, is it because he's started ABA thearpy 4 days a week this past week? Could be. Whatever the reason, I'm not stopping any of it.
1.17.2008
challenge (provocation) test
Holden had his 1st challenge test today at the DAN doc. He was given 450mg of Glutathione and then he had 50mg of IV DMPS. It sucked. I had to hold him down. Normally, I'd make Dietrich do the holding down, but he is out of town for work. So, I had to do the dirty work. She had a hard time getting the vein in his arm, but FINALLY did enough to get the blood draw we needed. We're also checking his hormone and cortisol levels. And checking to see if the TD Glutathione is helping him, so we're checking those levels, too. Then the vein blew, so she couldn't administer the meds through that one. Had to remove the needle and then poke him in his hand. He screamed and cried and cried and I cried. He looked at me, crying, and yelled "MAMA!!!!" I thought my heart would break.
For 8 hours, we're collecting urine. I'll send it to the lab on Monday and we'll see what comes out.
So far, he's okay. Tired, but okay. We're all beat after today.
For 8 hours, we're collecting urine. I'll send it to the lab on Monday and we'll see what comes out.
So far, he's okay. Tired, but okay. We're all beat after today.
1.14.2008
the "window"
Jenny McCarthy talks about The Window in her book about her son's autism. I've heard a lot of interviews, too, where she talks about The Window. How we have to pull our kids through this window.
I'm hesitant to type this, or think this, or admit this - for fear that it will go away. But, for the 1st time since Holden's diagnosis, I feel like The Window is at the very least ... opening. We have a long, long way to go in Holden's recovery process, but it feels like we're truly finally making some progress. And, progress that is notable. Not just us asking if it's a coincidence, or asking ourselves "did we really just see that?" and answering with a "nah, probably not".
Saturday, we were going somewhere - to run errands. Holden's been saying "bye bye" pretty consistently for the past few weeks. So, we told him we were going bye bye. I told him to go get his shoes so we could go. I kept talking to Dietrich and then realized as Holden walked around the corner and back into the room - that he had his shoes in his hands. Not only did he go get them. But he brought them to me to help him put them on. For most people, that's really nothing. Most parents can say to their kids "go get your shoes!" and they will go get their shoes. I've always wondered if Holden understands what I'm saying, yet he's unable to respond. Now I KNOW he understands most of what I say, because he IS responding. For a child with autism, that's huge.
So, yes, even if it's just a crack, The Window is FINALLY opening.
I'm hesitant to type this, or think this, or admit this - for fear that it will go away. But, for the 1st time since Holden's diagnosis, I feel like The Window is at the very least ... opening. We have a long, long way to go in Holden's recovery process, but it feels like we're truly finally making some progress. And, progress that is notable. Not just us asking if it's a coincidence, or asking ourselves "did we really just see that?" and answering with a "nah, probably not".
Saturday, we were going somewhere - to run errands. Holden's been saying "bye bye" pretty consistently for the past few weeks. So, we told him we were going bye bye. I told him to go get his shoes so we could go. I kept talking to Dietrich and then realized as Holden walked around the corner and back into the room - that he had his shoes in his hands. Not only did he go get them. But he brought them to me to help him put them on. For most people, that's really nothing. Most parents can say to their kids "go get your shoes!" and they will go get their shoes. I've always wondered if Holden understands what I'm saying, yet he's unable to respond. Now I KNOW he understands most of what I say, because he IS responding. For a child with autism, that's huge.
So, yes, even if it's just a crack, The Window is FINALLY opening.
1.09.2008
Paper!!
Holden loves paper. It's his "toy" of choice. He likes to shred paper, specifically. And hold it in his hand. Not just any paper, but paper towels or tissue. Regular paper you draw on just won't work. On New Years Eve, we spent the afternoon and night at a friend's house. Holden was really good. He crawled up in the chair with a few people and just hung out. He also played with his paper and when we were in the kitchen, we all heard him say "paper". Not just once, but 3 times. And it wasn't just me, but everyone else heard it too.
So, no more flukes. He's talking. It's not consistent, but he's talking. In the past week or so, we've heard "paper" (more, and again and again), "bath", "bubba" (for Jackson), "sissy" (for Zoe), "wawa" (for water). And it's great. He's not consistent, like I said, but we're hearing more sounds at least. And actual words. I really think his receptive language is improving the most lately though. While at our friends house on New Years Eve, he had a long sleeved shirt on and was sweating a little (damn Florida weather). I said to him "honey, do you want me to change your shirt and put on something cooler?" Not expecting him to actually SAY anything or DO anything. But he walked over to his bag, pulled out his other shirt, and laid it on top of the bag. And there's no way it could have been a coinidence. He's also listening to me more when I tell him to "come here". Or telling him to "get down". He's taken to crawling up on the trunk in the living room next to the TV. So, I think his receptive language is really really improving right now, which is awesome.
In other news: Zoe started her new school 3 days ago. She now has a total of 2 "really good friends", she says. I love that kid, she's so great. I was worried about her the 1st 2 days, but today she did so good and I know that we're over the worst of it. Thank God!
Tomorrow is such a full day that it's 9pm and I'm going to bed. We have ABA at the clinic from 9-11am, OT at the clinic from 1-1:30, walk to pick up Zoe at 2:30, and back for in-home ABA from 3:30-5:30. I'm tired just typing it out. Good night internet!
So, no more flukes. He's talking. It's not consistent, but he's talking. In the past week or so, we've heard "paper" (more, and again and again), "bath", "bubba" (for Jackson), "sissy" (for Zoe), "wawa" (for water). And it's great. He's not consistent, like I said, but we're hearing more sounds at least. And actual words. I really think his receptive language is improving the most lately though. While at our friends house on New Years Eve, he had a long sleeved shirt on and was sweating a little (damn Florida weather). I said to him "honey, do you want me to change your shirt and put on something cooler?" Not expecting him to actually SAY anything or DO anything. But he walked over to his bag, pulled out his other shirt, and laid it on top of the bag. And there's no way it could have been a coinidence. He's also listening to me more when I tell him to "come here". Or telling him to "get down". He's taken to crawling up on the trunk in the living room next to the TV. So, I think his receptive language is really really improving right now, which is awesome.
In other news: Zoe started her new school 3 days ago. She now has a total of 2 "really good friends", she says. I love that kid, she's so great. I was worried about her the 1st 2 days, but today she did so good and I know that we're over the worst of it. Thank God!
Tomorrow is such a full day that it's 9pm and I'm going to bed. We have ABA at the clinic from 9-11am, OT at the clinic from 1-1:30, walk to pick up Zoe at 2:30, and back for in-home ABA from 3:30-5:30. I'm tired just typing it out. Good night internet!
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