christmas

I haven't posted much over the past couple of weeks. The holidays have been crazy.

Zoe's out of school on break. We registered her at her new school last week. She'll start January 7th. She's not excited. I keep reminding her that it's only temporary - until we move to Dallas in June. Then she'll have to start another new school. Hopefully she'll be there for a while.

Jackson's growing like a weed. Had his 4 month checkup a week or so ago. I think he's about 14 lbs. now. Everything seems to be doing well with him. He's meeting the developmental milestones he's supposed to meet. So, we just keep watching him. Probably too much.

Holden's doing well. I think the clinic based therapy is helping him a lot more than I thought it would. He's responding well to the therapists and he's learning a lot. Biomedically, I'm pretty sure we have the MB12 shots to thank for his recent improvements. I've seen more with those, than with anything else he's started. If I don't write these down here, I'll forget. So:

12/22/07 - We had a family friend over. She's a Behavior Analyst. Holden was making great eye contact with her. He eventually came to get all of us, led us to the couch, sat us down, and then ran off laughing and smiling at all of us. If we moved, he would continue to do the same thing. And look at us for smiles and laughs. He initiated a "game", and as my friend said ... not only was it a "game", but a SOCIAL game where he didn't need a tangible reinforcer. Just us laughing and smiling with him seemed to be enough incentive to continue. He's never done this kind of thing before, so it was so so great to see.

12/25/07 - Christmas morning was good. He opened a few presents himself, and even was interested in some of the toys. Of course, after a while, he found the paper and would shread it, drop it, lather rinse repeat. But, all in all, he did great. We went to Disney (Magic Kingdom) on Christmas day. We rode: Aladin's Magic Carpet, Pirrates of the Carribean, The Haunted Mansion, Jungle Cruise, Peter Pan, and It's a Small World. He LOVED them all. Laughed the whole time and was really really focused. I didn't know how he would react - but it was so worth every penny it costs to get us there. He had such a good time. So did Zoe - riding Space Mountain for the 1st time (TWICE)! I'm so glad we went.

12/28/07 - ABA at the clinic. His therapist said he did great. Actually got a few verbal imitations out of him. This is big because we haven't been able to get him to this step yet, although it's been a goal for some time. She also told us that we've been chosen to receive part of a grant for hours at the clinic. Hopefully, will be 4 more per week, making his total there to 8 per week until Part C runs out on his birthday (April 10th). This would be so good for him, so my fingers and toes are crossed that we'll hear more about that soon.

As down and depressed as I had been feeling just before the holidays, I feel a little better now that it's all over. Holden did great. He enjoyed the lights, tree, presents, Disney, and Zoe also had the best time. Seeing your kids enjoy the holidays is just the best thing ever. I also started taking Prozac about a week and a half ago. I'm not really sure if it's making a difference. I'd like to think so, but I don't know if it's just the "high" from the holidays and seeing Holden have such a good time. Time will tell, I suppose.

Happy Holidays, everyone!

damn

When we moved to this house (renting) from the last house (also, renting), we moved into a different county. Still, only about a mile from the last place though. We decided to keep Zoe in the school she was in, for a few reasons. She was going through a lot at the time with dealing with Holden's diagnosis and how it changed our family. She already had anxiety about the FCAT which is a standardized test that all 3rd graders MUST pass. Yeah, I know, no pressure on an 8 year old, right? Seeing as they start telling kids about this test in the 1st grade - doesn't help to scare the ba-jesus out of them. And, we are planning on moving after the school year to Texas, so I didn't want to put her in a new school for a year, and then have to put her in another new school for next year. So, yeah, she's been going to the same school and doing great. Honor roll! She brought home a letter from the school 2 days ago, telling us that we had to provide proof of residency in the county for her to continue there. Obviously, I don't have that, so she has to go to a new school. I hate it. She's being such a trooper about it, but I know it bothers her. And it bothers us and we now realize that we should've just done the right thing to begin with - either found another house to rent in our old neighborhood, or enrolled her in the right school before the year began. But, we didn't. Live and learn, right? I'm just so sorry for her. She loves her teacher, is doing so well, and doesn't want to leave her friends. I know she'll be fine, but still. Breaks my heart.

I don't say enough about her on this blog. She's such a wonderful kid, really. I love her to pieces. And the boys couldn't ask for a better big sis!

mouthing

Holden was mouthing EVERYTHING yesterday. I sat with him for 30 minutes on the couch, just trying to keep his fingers out of his mouth. Pencils, toys, his shirt, paper, whatever he could find - was in his mouth. He had OT yesterday, thankfully, and they kept him for about 15 minutes longer than his normal 30 minute session. She gave him a vibrating teething toy and he used that most of the session and was still able to focus on what she wanted him to do.

Speaking of which. She had counting bears and the corresponding bowls. There are 4 colors - blue, red, yellow and green. She put red and green bears on the desk - with the red and green bowls. Using hand over hand, she showed him where the red bears went...in the red bowl. Then he picked out all of the red ones and put them in the right bowl. Then she did the same with blue and yellow. He picked out all of the blue and put them in the blue bowl. I thought maybe it was a coincidence, but she said it wasn't. He moved the other one's out of the way just to get to the color he was working on. Now, if he could just talk and tell us things!

Today he had ABA at the clinic for 2 hours. He's doing well there and I've decided to only sit in for the first 1/2 hour or so of the session. The remainder of the time, I sit in the waiting room. He does okay without me in there. His therapist said he was saying "mama" when I wasn't there. When it was time for him to come out, I went to the door and looked through the glass. He saw me and started running and smiling. Now that we're home he's very stimmy, but I think that's just because of the intense therapy he had this morning. He'll "even" off in a little while, I think.

ZOE!

My little girl made honor roll!!! 3 A's and 2 B's on her report card yesterday. I'm so, so, so, SO proud of her. She's really worked hard for it, and with everything going on in her life right now, she's really kicking ass. God I love her.

shock

Last weekend Dietrich was clipping Jackson's nails. I was on the couch, and Holden was on the floor ... stimming on a book. Jackson cried, because, well, he didn't like being held tightly. I noticed that Holden would look at him. He would look everytime Jackson whined or cried. Then, Dietrich clipped Jackson's finger a little and he let out a WAIL. Holden got up, walked over and touched his foot. Looked at him. And then walked away. Jackson kept crying and Holden went back to him. He touched his arm and looked at him, and then leaned in and gave him a kiss. I was in TOTAL SHOCK. Because, see, this means that he understands that Jackson was in pain. He "gets it". He knows that he was upset and he was trying to make him feel better. He had empathy for his brother. I cried.

"ball"

"ball". It's the most consistent word I've heard from Holden ... since, well, he was 15 months or so. Everytime he sees something round, he says "ball!". Putting up the Christmas tree yesterday, ball ornaments - he would reach for them and say "ball!". Walking through the craft store on Saturday, we walked by styrofoam balls and he said "ball!".

I didn't think I could ever be excited to hear my kid say ball. But, I'm SO fricken excited to hear him say ball!!

ABA

FINALLY. We have an awesome ABA therapist. Last Wednesday thru Saturday, Holden had 6 hours of ABA with the Director of the clinic he's going to. It was great. He responded SO well to her. And she's very comfortable with him, and it's just so good to see him responding to other people the way he does with her. We worked on "stop" and "go". Took walks, and within about an hour, he was able to sign "go" unprompted. We rolled a ball to Zoe. And just let him play outside. He loved it.

We've been at this therapy thing for 8 months and FINALLY have a good team of people working with him. I'm hopeful.

a better day...

Today was a better day. Things are looking up and I hope I'm coming out of this funk I've been in for a week or so. Sometimes I just need to feel the way I want to feel for a few days and then I can get back to the task at hand, which is to help Holden, be a mom to all of my kids, and a wife to my husband. I feel better.

Tomorrow looks a little like this: 9-11am: ABA for the 1st time at Quest Kids, 11:30-12noon: Speech at home, 1-1:30pm: OT at the clinic. Busy, busy morning. We FINALLY are starting the ABA through Early Steps, thank goodness. It's taken long enough, seeing as he's been approved since October 19th.

We went to a friend's house today to help celebrate another one of my friends' birthday. The friend's house we went to - she's an OT, and also has a son who WAS on the spectrum a few years ago. He's since tested "typical". Anyway, this was the 1st time she's met Holden. I was a bit nervous. Thinking he would just rub his hands on the walls, or find something to stim on, being in an unfamiliar environment. But, guess what? He didn't. He was SO good. He watched TV, walked around, played with their toys. He stimmed for about 20 minutes out of the entire 3 hours we were there. And even then, he was able to be interrupted without a tantrum. Nice. My friend said to me: If I didn't know he was autistic, just seeing him, I would have never guessed. I can't tell you how good that made me feel...

Last evening, the boys next door were playing outside. Zoe was outside too. I took Holden out, and the boys were kicking soccer balls and laughing. Holden was stimming a bit - walking back and forth, back and forth - the same path from our yard to theirs. Then, he saw the boys playing ball, and got a huge smile on his face, ran over, and laughed while he ran through them. It was obvious to me that he WANTED to play, he just didn't know how. I loved the fact that he even noticed.

And, I have to talk about Zoe for a second. She had such fun today with my friend's daughter - who's the same age as her. They love each other. They put on a fashion show for us and it was SO wonderful. I love that kid, I really really really do.

defeated

I feel defeated. I do. It sucks. The reality is that I will never give up this fight to help my son. BUT. And that's a big BUT. We were scheduled to have a new ABA therapist come over tonight. 1st appointment. She didn't show. WTF people? I want to scream and cry and punch someone.

THIS is the reason I'm even more determined to become a Behavior Analyst. I'm starting classes in January. I know what it feels like to get shit service for your kid who sits and waits for what he deserves. I told Dietrich tonight - PLEASE remind me when I have my own company what it feels like to not call a family, or not show up for an appointment. Remind me what it feels like when you feel defeated. Because right now, I feel defeated. And it sucks ass.

cracking

I walked to the mailbox today and I realized that I felt like the sidewalk I was on. Cracks all over the place, but somehow, still holding it together. Sometimes, most of the time, I'm okay. I'm dealing with Holden having austism and holding it together because I know my family needs me to. Holden needs me to drive him to therapy, make his appointments, work with him at home, mix his supplements. Zoe needs me to be her mom, pick her up from school and ask her how her day was. She needs me to help her with her homework and talk about her friends. Jackson needs me to feed him, change his diaper, give him warmth, rock him to sleep. Dietrich needs me to be his wife. He needs a partner in life, and someone to be by his side. He needs me to take care of the kids, and take care of the autism, too. So, I do. I know there's no one on this earth who can take care of my kids better than I can. I honestly believe that. But, lately, I feel like I'm going to crack - like the sidewalk.

I'm angry and bitter and depressed. I have so much guilt over wanting more for my life. I have guilt for wanting my son to get better, and not have autism. Guilt for not accepting his diagnosis, but instead, wanting to change it. Guilt for being SO incredibly angry at the universe for making me deal with this. Guilt for getting mad at Holden when he stims, even though I know he can't help it.

I keep telling my friends that I just need a vacation. I tell myself that I just need ONE day. One full day of no worries. I dream of sitting on the beach, in a chair, with a book and a cooler full of beer, and watching the waves at sunset. I dream of being alone for a day. And not worrying. It's a dream, because even if I were alone - I would worry. I would be thinking of my family. Is Jackson okay? Is he feeding from the bottle ok? Is Holden doing okay? Is he stimming? Did he SAY anything today? Does he miss me? Is Zoe okay? Is she playing with her friends? Is she helping out while I'm away? Is Dietrich okay? Is he stressed because the kids are driving him crazy? Is he frustrated? Is he okay with not taking a minute for himself?

So, the reality is that I don't know when I'll ever have one of those days to myself. Days to only worry about me. I think it will never happen, and who knows, maybe it won't. My family means everything to me, and I have to think of that on days like today, when I feel like I'm going to crack - like the sidewalk. Because if I do crack, who will take care of everything that needs to be taken care of?

HATE

My husband told me the other day that he found some pictures of me in a box. He said I looked so "happy" in those pictures. He said he hasn't seen me that way, ever. I told him that the truth is that he has seen me that way, but it's been so long, he probably doesn't remember. I'm happy with the idea of my life. I have a husband, 3 kids, and I'm able to be a stay-at-home mom. I love that. It's what I've always wanted.

Now, throw autism in that story and it just screws it all up. My life hasn't been the same since we realized something was wrong with Holden. Sometimes I wonder if it ever will be? If it will ever TRULY be good again. Will it? I don't know.

Today, everything is consuming me. Anxiety is killing me. Holden has been stimming nonstop for about 3 days now and it's breaking my heart into a million tiny pieces. I want to cry all the time. I have a hint of the feeling I had 7 months ago when he was diagnosed. When he goes through these modes, I also go through them. I don't lose hope, but I curse the universe. I've had other people say to me that I should accept him for who he is. And love him for who he is. My response? I love my kids more than I love life itself. I would kill someone for them. I would die for them. But I find it extremely difficult to accept autism. To accept him this way. This is NOT my son. The stimming, the sensory seeking behaviors, the frustration at not being able to talk - that's not my kid. That's autism. And I fucking HATE autism. I hate that I have days where I feel like I don't even know my own son. That I don't see his real personality, and all I see are odd, repetitive behaviors. I hate it that I KNOW he's in there and wants out and can't do it on his own. More than anything else, I hate what autism doing to my son, my family, and my life.

Yeast

It's back. The yeast. I figured this out on my own. Over the past week, he's had a few signs, and over the past 4 days or so, he's been extremely stimmy. Much more so than he's been in a while. I called his doctor and talked to the nurse today. She's going to call me back tomorrow after she talks to Dr. Berger, but she anticipates that he'll stop the Nystatin and put him back on Diflucan for the yeast. Poor kiddo. I just want to hug all of this away for him. I wish that were possible.

Despite the problems with yeast, he watched the Wiggles today and actually danced around with them. He laughed and played. He wanted to be outside, where the weather was awesome (who wouldn't want to be outside?!). He said "ball", "hi", and ... smiled at me more times than I can count. I'm thankful. Yet, tonight when I go to bed, I will still pray for a miracle, as I do every night.

still waiting

We're still waiting for Holden to begin his ABA at the clinic. Still. Waiting. It's crazy how much red tape you have to go through in order for your kid to start receiving the therapy he was approved for ... and clearly needs. If I've learned nothing else throughout this whole process - it's that nothing will get done unless I do it myself. I've left 2 messages today, so hopefully, we'll get him scheduled soon.

I just scheduled an appointment with Dr. Berger for December 18th. He'll have a blood draw to check his levels (hormones, etc.) to see if the latest supplements are working. He'll also have the IV chelation challenge test. I'm nervous about it, but I also know it's the only way we'll know what we're dealing with and how to "fix" it. We have an appointment to speak with his doctor 4 days prior, so I'll get all of the information on what to expect then. Did I mention I'm nervous?

In other news - Jackson's making sounds now. Smiling. Laughing. Growing like a WEED. He really feels like part of the family now. Zoe's on her 6's in her multiplication table. She has to have them mastered through 10 before Winter Break - in December. She's working so hard. I'm so proud of her.

Off to OT. More later.

ABA

Well, after much back and forth over the last 2 weeks, I think it's finally settled. Holden will get 5 hours per week in the clinic and 2 hours per month at home. Funny, they argue and argue that it has to be provided in the child's natural environment (home), and yet when I offered to have thearpy at home only TWO hours per MONTH, with the rest being in the clinic - they approved with no problem. Uggg. Frustrating.

So, they're going to check their schedules and find out when they can fit him in. Will be going 2 hours on Monday and Wednesday and 1 hour on Thursday.

He's doing really well. I think the MB12 shots are really helping him. He's saying things now. More consistent with signing, and definitely more focused and noticing things. I can only pray that the progress continues...

....aaaand the fighting continues

If there's anything I've learned over the past 6 months, since Holden's diagnosis, it's that you don't get anything unless you fight for it. I've been going back and forth with Early Steps since last Monday - 10 days - about Holden's services. He was approved because there was a NEED. Yet, it's like pulling teeth to get them to send an approval to providers. See, it must be on their terms. The fact that home-based therapy didn't work for us over the past 6 months (3 therapists, only 50% of the hours used due to therapists not showing, and starting services LATE, and, excuse me for being blunt, but crap services), means nothing to them. I was told today by the provider I chose that they could't get an approval because they weren't willing to drive this far to give us home-based therapy sessions. Um, hello?! Last Friday, I was told that the services AT THE CLINIC would be approved. Now, they're telling me that's not an option. That it's a federal mandate that it has to be home-based. Well, wtf people? How come the assistant director didn't know that 5 days ago when she told me all was well and she would send the approval for CLINIC based services? When I got off the phone with her today, I cried. I cried because of frustration at the system. The "No Child Left Behind" act. Cause, honestly, my child is being left behind. My child sits and waits while they get their shit together. My child suffers because they don't have competent therapists through Part C to provide services. My child is left behind because he has autism. It's not fair. I cried because it's painfully clear to me already, at the ripe old age of 2 1/2, that nothing will ever be easy for him. I cried because I feel like I fight so hard to get him what he needs and deserves, as every other kid does, and it's all a bunch of paperwork-federal mandate-bullshit. I cried because this is such a critical time in his therapy/development and he can't get what he needs. I cried because I can't get a straight answer and I feel like I'm on a rollercoaster that won't stop. I cried because I know there are other children who are doing clinic-based therapies (Holden being one of them, for OT) and now they're saying MY child can't. I don't understand this system that's supposed to help our children. I don't understand the "No Child Left Behind" act. Especially when my child is being left in the dust.

Zoe

Zoe decided to join cross country this year. She goes on Wednesday and Friday mornings and she's earned her first "foot" charm she wears around her neck. She gets 1 for every 20 laps she runs. She's also going to start competing in cross country. I'm so proud of her, really. I couldn't ask for a better kid. She brought home ALL A's on her midterm progress report last week. She's joining the Science Club at school, and she's just the best to have around right now. Of course, she's also 8 years old and going through some things. She seems to be much more sensitive now - crying easily, etc. But I guess that's par for the course with 8 year old little girls. I tell her "I love you" more often, and give her big hugs. I think it helps.

sleep. what's that?

I was SO hoping Holden wouldn't have the "sleep disturbance" side effect from the MB12 shots. But, I don't think I'm going to get my wish. Last night, he was up from 2 - 4:30am, and the night before, he was up for about an hour. He doesn't get out of the bed, he just lays next to me and "talks" to himself, or touches me, or laughs, or plays. I honestly thought I was just going to have to get up this morning at 4:30am and start the day. But, just when I thought he wouldn't - he fell back to sleep and I had to wake him up at 8 this morning. He's a little crankier than usual today. And his eyes are red. He looks tired. He's napping now, finally, and I'm going to keep him up tonight until at least 9pm to see if that will help.

I refuse to stop the MB12 shots because I really feel they're making a difference with him. He's more "with us" now. He's laughing, and smiling, and looking at the camera when we take his picture. He's looking at US a lot more than he was just 2 weeks ago. He's a bit more stimmy still, and if I have to take away an object that he's stimming on, he gets really really upset - which is something he wasn't having too much trouble with before. Of course, the sleep thing is a big change for him. He's such a good sleeper, normally, so to have him waking up in the middle of the night and not going right back to sleep is a huge adjustment for us. But, I'm going to ride it out and hope that this side effect will diminish over the next month or 2. My fingers, and toes, are crossed!

worth the fight!

We had Holden's ISFP meeting with Early Steps last Monday. I brought up the fact that he was approved for 78 hours of ABA from April 2007 until October 2007. He only received 39 of those hours. Not because I didn't make sure he was here for appointments, but because it took TWO months to find a therapist to come out to our home. After having to replace 2 therapists, it left us with only having used 1/2 of what he was originally approved for.

I went into the meeting fully expecting to hear that I couldn't get those hours back. I had a behavior analyst (who is a dear friend / old college roommate) present with us, as well as Holden's speech therapist. His speech therapist is recommending an increase from 1 hour per week to 2 hours per week. We were told that in order for that to happen, be prepared to lose an hour somewhere else in his service plan. That normally, they will cut something to increase something else. That didn't go over well with me for obvious reasons.

2 days after our meeting, I got a call and was told that they wouldn't give those hours missed back to us. I was also told that since we were paying for ABA therapy out of pocket (we hired someone since I coudn't find a decent and reliable therapist through Part C), they couldn't approve "duplicate" services. That didn't go over well, either.

I called the program director and left a message. We played phone tag yesterday and I called her back today and spoke with her. After 30 minutes of conversation, I was able to get Holden's ABA hours INCREASED from 3 to 5 per week. Which means, in essence, that I DO get those hours back that he missed. I also fought to have them done in a clinic setting, instead of home, because the home therapy had been so unreliable over the past 6 months. I explained to her that he only has 6 months left in the system and I don't want to spend 4 of those looking for a competent therapist.

So. 5 hours of ABA at the clinic of my choice.

ROCK ON! Although, now I'm kicking myself for not asking for 10 hours.

check up!

Jackson had his 2 month checkup yesterday. He's 13 lbs. 8 ozs., and 23 1/2 inches. His head is "average".

Everything looks good!

labeling

Holden has had 2 MB12 shots, so I'm not sure if this is related to them or not. You never know when you're trying so many things - what works and what's just started "clicking" for him. Regardless, yesterday, he touched Jackson 3 times throughout the day and said "baby". Labeling is a big thing for kids working on speech and language. Especially when they have practically NONE.

So far, the side effects from the shots seem to be minimal. I'm expecting an increase in the next week or so - once he gets a good amount in his system. So far, the most obvious side effect for him has been mouthing objects. He plays with his tongue alot and puts everything in his mouth. Studies show that older children who can describe what they're feeling say that they begin to feel a tingling in their mouth (tongue). Apparently, Holden's feeling that, too. So far, sleep is okay (a little more restless than usual, but not enough to cause any major problems), and the hyperactivity is okay, too. And, although they say to expect an increase in stimming behaviors - Holden's has seemed to decrease the past 3 days. Knock on wood.

MB12 shots

Last night, we started the MB12 shots on Holden. Luckily, I was able to do it once he was asleep. I use EMLA cream to numb the area, mark it with a marker, and then I put him on the floor to sleep. About 30-45 minutes later, I gave him the shot and although he jerked a bit, he didn't wake up. So, yay! I have a little experience giving them to myself when I had to take insulin while pregnant with him. It wasn't as bad as I thought it would be.

Now we wait. He gets them every 3 days. I've heard, read, and researched the side effects, which seems to generally include: hyperactivity / more stimming, sleep disturbances (either better sleep, or worse - could go either way), and mouthing of objects. The consensus is that if you can tolerate the side effects, then hang in there and they'll begin to diminish within 1-2 months. Most parents continue the shots even with the side effects because the benefits are worth it. I'm hoping for the same.

Wish us luck.

Proud Mama!

Zoe's been back in school now for about 5 weeks. She's doing SO great. I knew she had it in her, and I was just waiting for her to really take off. So far, she's gotten ALL A's and B's. She keeps bringing home 100's, and I keep putting them up on the fridge. I'm so, so proud of her. She's such a great kid. He helps me more than I can say, and without her, I'd be lost!

So, Zoe, I'm SO proud of you baby!

Realization...

I think Holden's beginning to understand he has a brother. He may not understand it's his BROTHER, but he's very curious about the baby lately. I've noticed over the past few days that when I put Jackson down for a nap in the front room of the house - Holden seems to disappear a lot. When I find him, he's in that room. Not really looking at Jackson, or trying to touch him - he's just IN the room. Looking for things to play with I suppose. Today in the car, he touched his hands and feet, and then touched his face. So, maybe after 6 weeks, he's beginning to realize that this baby isn't going anywhere! ha. Either way, it's nice to see him take SOME sort of interest.

LOVE when he does this.

I had to post this because I just LOVE when he responds to me. He was sitting in his chair, watching Elmo, and had something in his mouth. I look over and see that it's paper (he loves paper, ya know) and so I said "Holden, give that to mommy" and held out my hand. He got up, took it out of his mouth, walked over to me, and put it in my hand.

He hears me. He understands me. He's IN there, I just know it. And "little" things like this just reaffirm what I already know.

positive, negative, or not even related.

We've been on the Nystatin now for 9 days (and off the Diflucan) and Holden seems to be tolerating it well. I say "seems", because I really don't know.

He hasn't had any strange behavior, but he has been a little more whiney, a little more 'stimmy', loss of appetite, and this morning, he had a really dark runny poop. (yea, I know, TMI). These aren't really normal behaviors for him. But, I noticed a few days ago that he had a molar coming in. So, is this all from him cutting his tooth, or from the change over in meds?

We also just started the glutathione cream once a day 3 days ago. I don't know how long it takes to be absorbed into the bloodstream. So, it could be a positive thing. Could be signs of detox?

So, are these behaviors a positive response to the glutathione? A negative response to the change over in anti-fungal meds? Or, are they absolutely not related to any of his treatments and it's related to him cutting a molar?

So many questions with all of this. I've decided to ride it out for the weekend. See if his poop problems improve, or get worse, or stay the same. And, just watch his behavior in general. I'm assuming if the yeast is coming back from switching the meds, then the behaviors will increase. If it's detox, then maybe they'll decrease. Who knows. I'm flying by the seat of my pants here. Obviously.

Dimples

DAN! Doctor Update

We had an appointment with Dr. Berger last Friday. We did this appointment via phone, and it lasted for 1.5 hours. We discussed A LOT. Instead of trying to type all of it out, I've copied and pasted the notes from our call.


CURRENT TREATMENT:
ES 2 cups per bath
ES rubs once a day
Cod liver oil 2 tsp daily
carnosine 2 cap twice a day
Nu Thera 1 cap twice daily
Calcium 1/8 tsp twice a day
Factor-4, 1 cap daily
Diflucan 1/2 tsp daily
Vitamin C 1/16 tsp twice daily

STOPPED TREATMENT:
AKG - much rocking and agitation
Wt: 34 1/2 lbs

EVALUATION AND PLAN:
The repeat zinc level was not high like before, that must have been a lab error. The ratio of copper to zinc is mildly high but I don't think it is significant. The family reports they really can only do 1 Epsom salt rub a day in addition to the baths. I advise they do the best they can, but the sulfate level is in range now so he must be getting plenty. The ammonia level is normal. I see no reason to give the alpha ketoglutaric acid. The glutathione level was again low on the repeat (though not as low as we had originally seen). I would recommend the continuation of glutathione as a primary therapy. I would first like to do this as a transdermal agent to try and avoid IVs if at all possible. If we do not see a clinical improvement like we did with the low dose IV glutathione (we never got to the higher dose) or if with the transdermal we are not seeing the values of glutathione coming up, then the IV should be reconsidered. We will make up a transdermal glutathione that has 500mg per dose. For the first week, apply 1 dose a day. Then if all is fine increase to 1 dose twice a day. This is applied to the chest or back.

In addition, we discussed how MB-12 is a vitamin that helps to stimulate the internal production of glutathione. I would like to also start this therapy. The MB-12 is given as a subcutaneous injection (at a 30-degree angle) to the outer buttocks or thigh. It is given every 3 days. Place a pea-sized drop of EMLA cream (lidocaine) on the appropriate spot on the skin and rub it in well (mark the area with a ball point pen) and then give the injection about 45 minutes later. Just prior to administering, wipe the area twice with alcohol. If you see a bubble form under the skin you went to shallow, if you see any pink color to the urine, you hit the muscle and went too deep. We will use a dose of 1250mcg. It will come as pre-filled syringes. Keep them in the fridge until 1 hour before administering, then take out so it warms to room temperature. If you do not have 60 minutes ahead of time, roll the syringe between your hand for 5 minutes. Just before you give the injection, pull back on the syringe so that a small amount of air enters the syringe, then slowly squeeze the air back out. This is so the plunger will slide smoothly. Do not pinch the skin before administering. If you see anything negative from the MB-12, immediately start giving him 1/2 capsule of folinic acid twice a day. if there is still a problem 4 days later increase to 1 full cap twice a day. If things are not better several days after that, stop both treatments and call me. If you do not see anything negative, do not start the folinic acid now, rather we will try it in about 2 months into the MB-12, as for some people the addition of folinic acid brings even greater benefit. The reason we do not do it to start off with is that there are some people for whom the folinic acid blocks the action of then MB-12.

We are still seeing high dihydrotestosterone and DHEA, so we know the fluconazole did not treat this appropriately. We are seeing absolutely no yeast in the stool now, so we know that the fluconazole worked for this and any clinical improvement that was seen due to the fluconazole must have been through yeast elimination. If we were to not continue any antifungal therapy, there is a very high chance the yeast will come back I would therefore like to start him on Nystatin in place of the fluconazole and see if there is anything negative when the change occurs. If not, then in a few months we will repeat the stool to see if the Nystatin is holding the yeast down. The dose for the Nystatin would be 1/4 tsp of the pure oral powder twice a day. When you get the package, please make sure it says "for oral use".

For the hormones that are high, we discussed the various treatment options that are available (including licorice root, cortisol, lupron and spironolactone) , and at this time the family would like to try licorice root. The active ingredient that we dose on is called glycyrrhizin. The dose would be 3mg twice a day (which is just under 0.2mg./kg/dose). Prior to starting this please have his blood pressure checked locally, and until we get settled on a dose (we may need to go higher if we are not seeing the hormones come down but if the cortisol stays down) we should get the blood pressure repeated every 2 weeks. Then after 1 month we will repeat the testosterone, dihydrotestosterone and DHEA and see if there was a change. We also will get a cortisol level and there are a few other hormones that can be affected as well that we have not checked yet but I would like to look at for safety purposes. Please do not stop this therapy (unless there is a negative reaction of course) and get a refill to get you through to our next
appointment if you need to.

We went over the basics of performing a chelation challenge. I would go with rectal EDTA CaNa2 at a dose of 750mg as the challenge. We can discuss this further in the future or if the family wishes to go forward before we formally speak again, I can send the instructions. We also discussed the possibility of doing an IV chelation challene at the same time we poke him for blood since we will be in his vein already. If this is an option lets discuss it for 15 minutes before we get to the blood draw appointment.

SUMMARY:
First change over to the Nystatin.
Assuming all is fine, 1 week later start the TD glutathione at once a day.
Then 1 week later increase the glutathione to twice a day.
Then 1 week later start the MB-12.
Add the folinic acid if needed.
Then 2 weeks into the MB12 start the licorice root.
Then after 1 month of the licorice root we will repeat the hormones.
If the family is going to do the chelation challenge test before we speak again, do it 2 weeks after starting the licorice root (or with the blood draw if IV). Then we would have the urine results back by the time the hormone results are back.

Hope. Faith. Recovery.

Watching Jenny McCarthy on Oprah the other day really made me think about how it felt when I first found out about Holden's diagnosis. I remember the moment when my husband and I talked and just knew in our hearts what was going on with him. We didn't need a doctor to tell us. After a few weeks of feeling very helpless, hopeless, and just plain "out of it", I got online and started to google. Just like Jenny said, I googled "autism recovery". I looked for stories of hope. I wanted to find someone, another mom, who had gone through this and came out on the other side with a child who had recovered. And, I was surprised when I found not just 1 other mom, but MANY, who had been through this, and who were now talking about their story. I met so many wonderful women online who have given me so much support, I truly don't know what I would have done without them. It's so true that you feel alone in this world of autism. And when you have others who know what you're going through, it somehow eases the blow a little. So, I'm thankful that I've found so many great people out there. And thankful that so many have decided to share their stories of hope. Another thing Jenny said that struck a cord with me - "Hope, Faith, Recovery". I looked and found hope from other parents and now have complete faith that my son will recover from this and live a happy life. It's not an easy journey by any means, but it's a necessary one, and one that I'm committed to.

bad day

Although I watched Oprah last night with Jenny McCarthy and Holly Robinson-Peete, it hasn't helped me with the day I've had today. It's not really Holden. That's some of it. But, juggling the baby and him and everything is just wearing me thin today. Not much sleep last night, as Jackson was up from 1-3:30am. Holden's extra "stimmy" today. I don't know, maybe it's because I slacked off and didn't order his L-Carnosine on time. He's gone 2 days without it now. Which isn't good. Or, maybe it's because his dad is still gone on business (but will be home last night, thank GOD). Or maybe the change in routine - things have been a bit different for us in the past few days, with it being just me here. And, of course, I'm sure he can sense the stress coming from me. Trust me, I'm leaking stress. It's leaking from every pore in my body. I hate myself on days like this - Im' just angry at the world and it not only affects me. But it affects my kids, too.

So, I gotta get out of this slump. Somehow.

ABA Therapy

Holden gets 3 hours of ABA per week through early steps. His behavior analyst comes on Mondays & Wednesdays.

Today was a good day. He said "eat", or .... more like "eeeeeat" 5-7 times when he wanted raisins. (He loves loves loves raisins) He was more affectionate today. He climbed up in her lap and wanted her to hold him, and hug him. Funny kid. He's definitely become more social. Maybe not with kids yet, but with adults. And that's a beginning.

He was a bit "stimmy" today. But, I think that has to do with his dad being gone (again, for work), and I screwed up his nighttime routine last night. Tonight, I know better! So, we'll see how he does tomorrow. His behavior analyst stopped the stimming once today and he was easily redirected. He has this thing now. He throws - well, more like drops, things off of anything. For ex: he'll take puzzle pieces and get up on the couch and drop them one by one onto the floor. Pick them up. Repeat. So, really, it's anything that has a lot of pieces. Pieces of the perfection game, he does the same thing. If he's not dropping things off an "edge" of something, he's hiding them and sitting on them, or finding them again. I can't figure out if it's a sensory issue, or just a repetitive/stimming thing. If we can figure out how to redirect him to a different activity (if it is sensory) where he gets the same input, we would. Thing is, I can't figure out if it's visual...or tactile. I think it's tactile. He's not watching the pieces fall. He's just letting them go. I think it's the feeling of having something in his hands, and then not. He's very touchy-stimulated. Rough surfaces, etc. I thought about getting a piece of sand paper and keeping it handy, so that when he rubs on the walls, or starts to stim, maybe I can redirect him to the sand paper and see if that helps? Anyway. It's all a guessing game at this point.

The second time she stopped the stimming with puzzle pieces, he cried. He laid on the floor and cried - for 6 minutes. It felt like an eternity. She says that 6 minutes is nothing really. That "typical" 2 yr olds tantrum for much longer than that, on average.

And, on top of everything, like I said - last night, I screwed with his routine, so he didn't go to sleep till 10pm. I have a feeling by the time the last little "fit" happened today around 11am, he was ready for a nap - on top of everything else.

We went to the park today and he just loves to swing. I love him to swing because I love the look on his face. His smile. His dimples. And, most importantly, the eye contact he gives me. I can really SEE him when he looks at me ... if that makes sense.

Words!

Yesterday at the mall, we went to a store and Holden was playing with a stuffed snake. They had different colors and I asked him - do you want blue or green. He had the green snake in his hands and he said "geen". Dietrich and I looked at each other, in shock! We both heard it. He wouldn't repeat it, of course, but thats okay.

At the park today, he was in the swing. He motioned for my mom to give him her hands and then said "out". We thought he said it, anyway. So, she asked him if he wanted out and he said "out". So, yeah, I guess he really did say it!

This afternoon, he pulled a bag of chips off the kitchen counter and I put him in a chair and asked him if he wanted to eat. He said "eeeeat". Not once, but twice.

I can only hope that all of these little sounds, words, or whatever they are will increase and he'll just continue to develop speech at a quicker rate than he has been. I can't tell you how nice it is to just hear a few words throughout the day from him. What a blessing!

Crazy Week

Holden has done so, SO many new things this week.

Wed, 9/5 - During ABA therapy, I interrupted his stimming (on plastic perfection pieces) and joined in with him. He hesitated at first, but then let me. We played. He played, instead of stimmed. Or, as least, he let me join him in his stimming. We worked on the sigh for "please" and he did it, only needing a verbal prompt after the 2nd attempt. His speech therapist came right after ABA and commented on what a good mood he was in. How much more verbal he was, and engaging.

Wed, 9/5 - After dinner, he was stimming on a book - flipping the pages over and over, like he does sometimes. His back was to me. I stood in the playroom (which is next to the stairs) and said "Holden, come to mommy, time for bath". He didn't respond. I said it a 2nd time and he put the book down, got up, walked over to me, took my hand, and led me to the stairs.

Thurs, 9/6 - Lunchtime, I gave him a banana. I always says "ba-nana" when I feed him a banana. He said "nana".

Thurs, 9/6 - After picking up Zoe from school, we stopped at the park. I put him in the swing and he LOVED it. He's always liked swinging, but, before, we had to fight for eye contact twice in a 30 minute session. (We learned to do this from his OT). This time, he gave me eye contact for 90% of the time and smiled and laughed, and it was as if I could see him in there ... it's the first glimmer of really seeing that he's still "there". Also, before when we went to the park, he would shuffle his feet through the mulch, instead of being interested in any of the equipment. This time, he walked over to the equipment, climbed up, and wanted to slide. Then, when leaving the park, I was prepared for a full-on tantrum because he hates leaving. He smiled at me, I explained we had to go, and he got in his carseat with no trouble - no whining, no crying, no screaming.

Fri, 9/7 - Leaving to go pick up Zoe from school. I said "Holden, let's go bye-bye, we have to pick up sissy". He didn't even hesitate - he got up, walked to the TV, turned it off,
and came to me with arms up in the air.

Sun, 9/9 - Again, when told we were going "bye-bye", he put down his paper (he was stimming on shreading paper), went to the TV, turned it off, and came to me.

Mon, 9/10 - While in ABA therapy, the therapist stopped him from stimming and redirected him to another activity. He was "easily" redirected after only a very brief whine.

Mon, 9/10 - Dietrich came home from being gone for 3-4 days. In the evening, he was playing with a toy and when daddy called him, he turned and looked at him. He only does this maybe 50% of the time, if that.

Mon, 9/10 - Dietrich found his Big Bird we made at Build-a-Bear about 5 months ago in the garage. He would make the "ahhhhh" sound and open big birds mouth (almost like using a puppet). Holden would open up big bird's mouth with his hands and then say "ahhhhhh!" Imitating!

Tues, 9/11 - During OT, he noticed other noises going on in the room. When his OT hit a button on a electronic toy, he turned and looked. He also followed directions well. Engaged with the therapist, and made GREAT eye contact while in the swing (and out of the swing, actually).

Tues, 9/11 - During the evening, I went into another room to change Jackson's diaper and Holden walked in with Big Bird under his arm. A binkie in the other. He had his back to me and I walked over to see what he was doing - he was putting the binkie in Big Bird's mouth. Pretend play!! I said "let's go, honey", to direct him out of the room and he followed me. Then, he wanted to be rocked in the rocking chair, but while having big bird under his arms. He slept with him.

Wed, 9/12 - a.m., we woke up, and I asked if I could give big bird a kiss - he put big bird in my face to give me a kiss. We came down stairs - with big bird. We sat on the couch and I pretended to give big bird a drink from his sippy cup. He imitated me ... tried to give big bird a drink from the sippy, too.

Wed, 9/12 - During ABA, his therapist made the comment that in the past few sessions, she's noticed much less stimming.

Wed, 9/12 - When his speech therapist left, on the 2nd attempt, he picked up his hand to wave to her!!! We've worked on this for a while now, but he's never attempted to raise his hand to wave. He did it twice, unprompted. The 1st time, I did hand-over-hand and waved bye-bye. Then she waved at him again, and he lifted his hand in the air - all the while - making eye contact with her. Then, she did it again, and he followed her lead. So, TWICE, unassisted!

He's also been VERY verbal over the past week. Loud sounds, too. New sounds, or at least, sounds we haven't heard in a long time - "Ga-Ga-Ga", "Ba-ba-ba", and more. He's also imitating more sounds at night after bathtime (seems to be the best time to get him to imitate). He's also turned off the TV during the daytime hours - and has gone to find something else to entertain himself with ... toys.

I don't know what to think, or how to feel. I haven't seen this much NEW 'stuff' from him ... in this amount of time ... in the past 6-8 months. I'm happy. Thrilled. Cautious. Scared. But most of all, he just seems "happy", and THAT makes me happy. It just reaffirms my faith that one day, I'll have my baby back. It's going to take a lot of work over the next few years, but I see him in there ... and we're going to help him come back to us.

OT Eval / Goals

Today we had OT. The insurance company is asking for a re-evaluation at this point. He's been in OT for almost 6 months.

His OT, Michelle (we love her!), retested him on some items. She also revisited his original goals. He's met a lot of those goals and then some. One of his goals initially was to make eye contact twice in a 30 minute session. She said he's met and surpassed that goal. There were other goals that he's met, too. And she's created some new goals for him. We're going to continue to work on eye contact (as that's one that I always want to work on), start working on 3 step directions, and transition from session to car, and transition from 1 activity to another. We'll also work on stringing beads - as he takes the beads off of the string, but can't quite get them back on.

I can't tell you how good it felt to know that he's met most of his OT goals set for him 6 months ago. I know he's making progress, but I can't say how great it is to have the confirmation. It's a good day today.

while they're sleeping ....

I thought I better post this before both of the kids wake up. Which will probably be any minute now that I've jinxed myself.

Anyhoo. I wanted to get this down before I forget. Yesterday while the behavior analyst was here for Holden's therapy, he was stimming on little plastic pieces to the game "Perfection". He was gathering them and dropping them off the side of his table. Picking them up, dropping them again. Rinse, repeat x 20. So, I got on the floor with him and started "stimming" with him. I would let him drop them ... but in my hands, instead of on the floor. At first, he pushed my hands away. Then, after the 2nd attempt, he let me catch them. He smiled. We did this a few times. I would interrupt him and tickle him, and then let him go back to doing what he was doing. The interruptions didn't seem to anger him at all. He continued to let me join in with him, and after a while, we started working on signs. I would take the plastic pieces and not let him have them until he said "Please" (by signing it). After the 3rd attempt, he was signing "please" with only a verbal prompt.

I did this with him for about an hour nonstop. Yes, the behavior analyst was here, but, apparently, she was only doing "parent training" cause I was the one on the floor, interacting with him. But, that's another story.

Anyway, after she left, the speech therapist came over about 5 minutes later. She commented on how much more interactive he was. How much more verbal he was. And what a better mood he was in. I think by me joining in with him - it really opened the door for him to engage with us. I've heard of the "Son Rise" method, and even have an online friend who runs the program for her son. Yesterday was the first time I've seen it actually work!

Also, yesterday afternoon - I called for Holden to come eat. He didn't respond, so I called him again. I said "it's time to eat, Holden, come to mommy". He stopped what he was doing and came to me. Then, after eating, he sat on the floor and started stimming with a book - turning the pages over and over again. I stood about 20 feet from him and said "Holden, it's time for bath, come see mommy". He didn't respond, so I said it again. The 2nd time, he put the book down, got up, and walked over to me. Took my hand and took me to the stairs. The bath is upstairs. So, this tells me that not only did he respond to me, but that he UNDERSTOOD me. So, I had a few "wow" moments yesterday. It was a good day...

made my day

i thought i'd get a post in while i have a minute (cause lord knows i don't have much more than that anymore during the day).

right now, at this very second - holden's jumping on his trampoline. zoe was sitting on it, and he pushed her off, in true "holden" fashion. but, then, she got off and he pulled her hand back. he's trying to get her to get ON the trampoline with him, to jump. he's smiling at her and keeps wanting her to pick him up.

he's actually PLAYING with her. my day is officially "made".

"wonder" drug & new therapists

Holden went for his bloodwork yesterday at the DAN! doctor's office. I had gotten a prescription for EMLA cream prior to his appointment. I didn't go to his appointment, seeing as I'm 10 day post partum, and Zoe started school the day before and I needed to stay home and make sure she got to school.

The EMLA cream apparently works well. Dietrich and my mother-in-law both said he didn't flintch one bit while being poked and having blood drawn. It wasn't until they began to administer the Glutathione that he had a mild freak-out session. And, I honestly think it was because the Glutathione was so thick, that it may have burned going into the vein. When I had Jackson, they gave me a pain med in my IV and had to give it slowly because it was so "hard" on the veins. It burned like hell. So, I'm sure he also felt the same thing, since the nurse said the Glutathione is extremely thick and has to be given very slowly.

So, Glutathione is this "wonder" drug. It's not a "drug" really. It's an amino acid. Our bodies naturally produce it, so it can't be classified as a vitamin. It's the most important agent our bodies produce in order to naturally detox our systems. Holden's Glutathione levels were only 1/2 of what would be considered "normal" range. His body doesn't naturally produce it right now. We opted to have the IV push of Glutathione to see if it made a difference. It did. Last night, Holden made more consonant-vowel sounds than he ever has. He said "wow" yesterday on the way home from the doctor. He was happy. His energy level was increased and he laughed and smiled and made good eye contact. The nurse says there are ways to administer Glutathione daily. It doesn't work orally - it should be given through a cream form, or an aerosol (breathing treatments). We have a followup appointment on September 4th and I'm going to ask for some type of daily dose.

We fired Holden's behavior analyst. She called in sick ALL. THE. TIME. I liked her, but, she was just not dependable. Not consistent. I called and asked for a new thearpist. She came out today. Her name is Barbara and I like her. I think she's definitely more professional. She asked a lot of questions. When I told her that I want to learn how to do what I need to do at home for Holden when she's not there, she said "that's what I'm here for". She's more positive. Even going as far as explaining to me that many of his behaviors I told her about are "normal", but just exaggerated. And, that teaching him in a different way is what is going to help him most. Did I mention I like her? Cause I do. So, she'll be at the house from 9:30-11am every Monday & Wednesday. Here's looking forward to Monday......

He's here!

Jackson Collier Block. Born on August 10th @ 12:53pm. Weighing in at 8 lbs., 15 ozs. He's wonderful!

holy moly, we're busy!

Zoe turned 8 yesterday. 8. I can't believe it. She's just the best kid in the world...

Holden imitated me 3 times in a row on Saturday evening. He was in his highchair and I asked him to "do this" and he did 3 things I asked him to - 1.) tapped his spoon on his highchair like I did, 2.) put his hands in the air, and 3.) clapped his hands. He did them all on either the 1st or 2nd request. His eye contact has been pretty good lately, too. I don't know if it's the L-Carnosine or not. He's up 600mg. now and I'm going to add the other 200mg. in the next 2 days. Research shows we could see improvements within 1-8 weeks of being on it. He's been on for 1 week and hasn't reached the full recommended dose yet. I'm hoping for great things to come our way soon.

2 more days until the amnio on Wednesday. Then the c-section on Friday. I'm SO ready. I need a martini!

37 weeks, my 7 yr old is turning 8, and starting more supplements

There's so much going on for us, I can't keep track. But I'll try.

-I'm 37 weeks pregnant today. 8 days until the amnio, and 10 days until the scheduled c-section. Today, I had a regular appt with the OB (waste of time, as I saw a nurse who asked me if I had any questions and when I said "no", said "okay, see you later"). Then I had a NST at the hospital and they kept me hooked up for 1.5 hours because this little guy's heartrate was in the 180's. Excited, I suppose. Eventually, they let me go, thankfully. So, now, I sit and wait 8 days until the next step in this process. I cannot WAIT to get this pregnancy over with. I'm gonna have a HUGE martini!

-Zoe will be 8 on Sunday. How is that possible? I mean, just yesterday, she was born ... 8lbs. 9ozs. Now, she'll be 8 and she's starting the 3rd grade in a few weeks. I just. I don't know where it goes. The time. She's a typical 8 year old. She's turned into quite the young lady, and the best big sister in the world. She's so patient with Holden and even though she's aware there's a chance (although, be it small) that Jackson will also have "problems", she's ready to accept him and help and love him just as she does Holden. She has such a big heart, and is one of the most loving kids I know. She's respectful and parents tell me all the time what a good kid she is. We're so proud of her.

-Now that Holden's rash has disappeared and his 'negative' behaviors have subsided, we're starting the epsom salt rubs again. Along with starting the L-Carnosine. We're holding off on the Alpha Ketoglutaric Acid for now - until we check his ammonia levels at the next blood draw - scheduled for August 21st. I'm starting with a very diluted mixture of the salt rubs, hoping not to irritate his skin. And, we start off with 2 caps of L-Carnosine daily, working up to 4. I'm hoping that he has good results with these.

My friend came over for dinner this past Saturday. She's a behavior analyst and has been doing this type of work for 11 years. She told me that he's definitely improved since the last time she saw him (about 3-4 weeks ago). Said he's more engaged, and more aware of things going on. She said he's moving in the right direction - and THAT made me happy. It's hard for me sometimes to see the progress - I'm so closely tied to him. I'm never away from him, and so, people who may not see him all the time - see the changes before I do. Or at least, recognize them as progress.

We're busy over here, but i keep telling myself that August is going to be a good month!!!!

sunday

We decided this weekend to cut Holden's hair ourselves, so we didn't have to deal with the "freak out" sessions at the hair cutting place. I love it, but it makes him look more like a little boy, than my baby.

He's also improving since my last post. No more rough, red rash, and no more "rocking" or strange behaviors. Thankfully. I honestly think he was going through a detox stage, in addition to having a bad reaction to being taken off the anti-fungal meds. Whatever it was, it seems to be over and I'm just thankful.

stepping back

Holden's developed some 'strange' symptoms / behaviors over the past week. So I spoke to Dr. Berger via phone last night and we've decided to take a step back. He said when negative behaviors develop, he likes to "undo" the last step taken to see if thats causing it. We're taking Holden off of the salt rubs, and off of the alpha ketoglutaric acid - for 7-10 days to see if there's improvement. I also ran out of his anti-fungal medication and failed to refill it fast enough. He's been off of the diflucan for 4 days, which could have allowed yeast to grow back in his intestines. We're to start that again, immediately.

His symptoms/behaviors over the past week (in order):

-rough, red skin rash on his arms, upper thighs, and stomach
-vomitted (once - not sure if this was even related)
-constipation
-after constipation; black, sticky poop with "specks"
-acting frightened at a lot of things - TV, when waking up in the middle of sleep, etc.
-new stimming behaviors, including rocking back and forth (something he's never done)

Hopefully the symptoms will improve and we'll slowly add things back in to see what may have caused the negative reaction.

Pains

I've been doing the epsom salt rubs on Holden for about a week now. Today was the first time I did a morning rub, and it wasn't so bad. He doesn't like the way it feels when it starts to dry though, so, once it's dry, I wipe it off with a wet paper towel. It seems to make him a bit lethargic though. Don't know if that's the epsom salts, or if he's just been in one of those moods.

I emailed Dr. David's nurse today because he's developed a red, rough rash on his arms, stomach and legs. Kinda weird because I thought it might be the rubs, but, he gets most of the salt on his back because he can't mess with it, and his back is fine. Sooo. Not sure what that is, but I emailed to find out. He was also a bit red around his eyes, and his cheeks were red, too - this past weekend. He did the same thing when we went through taking the dairy out of his diet. It lasted a few days and then went away. So, maybe it's just his bodies way of detoxing, I don't know.

Anyway. He's into the Wiggles now, so we watch about 10 episodes a day. He loves it. He runs around when they sing and dances. He jumps on his trampoline. I'm okay with it, because it gives me an opportunity to dance around with him and try to get him to imitate some of the gross motor skills they're doing on TV. And, the activity seems to put him in a great mood.

Although, right this instant, he's wanting to be held, so gotta run. Will update more later.

Dan! Doctor Update

Holden had an appointment with Dr. Berger last Friday. He explained the bloodtest results to us and we've added a few things to his mixture of supplements, vitamins, etc.:

-Alpha Keto Acid - this is to lower his ammonia levels (1 cap / day).
-Epsom Salt Rubs - in addition to the epsom salt baths because his sulfate levels are still too low (twice / day).
-L-Carnisone - Holden has none of this in his system and Dr. Berger explained that studies show it improves symptoms in ASD kids; so this was something he really wanted us to start. We will start 2 caps, 10 days from now, and slowly work up to 4 caps per day.

We have a repeat blood test on August 21st (joy, joy - I HATE having to stick him again) at which time he will also administer an IV dose of glutathione. He's going to start with a low dose (300 mg.) and work up to a higher dose if he shows improvement. Holden's glutathione levels were one of the lowest Dr. Berger has ever seen. He would like to repeat this level just prior to infusing with the IV dose. He said if the levels are truly as low as they show on this recent blood test - then we should see a dramatic improvement with the IV dose next month.

Our next appointment with him will be 2 weeks after the bloodtest and IV glutathione.

We discussed chelation and he explained that it's very important to get the yeast levels down before starting full chelation. If not, it could have the opposite effect. We will continue the diflucan for now and will send in another stool sample test in 2 weeks to see if the yeast has cleared up. If not, we will add at least 2 weeks of diflucan onto the month he's been on it already. This will also help with his high levels of testosterone. Dr. Berger said this could be a long term medication, but he would lower the dose if using only for maintenence.

All in all, it was a good appointment. Hopefully we will continue to see improvement in Holden. I'm hopeful.

dear baby # 3,

kid, seriously, you're killing me. i'm tired, oh so tired. all.the.time. i've taken to raspberry mocha frappachinos from starbucks to get me through each day. i can't sleep at night because you're so damn heavy now that it hurts my back, hips, butt, and every organ on the inside - especially my bladder. my poor bladder - i was up 4 times last night, and lost count today of how many times i've gone to the bathroom.

you're moving like CRAZY. yesterday, i actually had to get up and walk around because i could feel your feet in my ribs. you settled down, but, started back up shortly after i sat down.

you have a schedule now. pretty quiet in the evenings - from about 4-8. then, around 8, 9pm, you're up and going strong. rolling now, not just kicking.

i'm having twice weekly NST's now, and this morning, you decided NOT to cooperate, so i had to lay on my side (uncomfortable) so they could get some reaction out of you. i reassured the nurse that you are indeed moving around in there, but your heart rate didn't elevate like they wanted. so, i had to stay connected for an extra 10-20 minutes, thankyouverymuch.

even with all of that, we cannot wait to see you and meet you. your sister is going nuts. she wants to rock you in the rocking chair. your brother is rubbing my belly and actually saying "baby" - a fete in itself. he's constantly putting his head on my belly, and has discovered that mama's boobs are now incredibly huge.

so, hurry! well, don't hurry, because we're not entirely ready. but, august 10th can't come fast enough.

love,
mama

blood test results

So, I thought I had already posted about this, but apparently my pregnancy mind is out of wack - surprise, surprise.

We got Holden's blood test results back end of last week. We haven't spoken to the doctor yet about them, his appointment is Friday, the 13th. So, we'll really find out what they all mean at that time.

But, from what I can gather and what Dr. Google has said - his results weren't good. Which, in reality, this is the one time that I'm all for his test results being "bad". Why? Because it means that there's a reason for things. Now I have proof that his natural ability to detox is just not there. Which means that he's full of toxins. Which means that we can actually DO something about it, and hope that it increases his ability to learn and focus and progress.

His ammonia levels are high. Dr. Berger thought they might be. He said this would explain the "spaciness", and cloudiness he displays. For his metabolic panel, he had low levels of 2 out of 3 things his body needs to detox. He's low in sulfate and glutathione. His regular blood tests showed low levels of a few things, and increased levels of others. When I google those things and autism - he's pretty much text book for things he's "off" on. He does have extremely high levels of zinc, which is strange. Normally, kids on the spectrum have a zinc deficiency. So, I'm not sure what that's about. I'm sure we'll get more clarification next Friday at his appointment. And then we'll learn what the next step is in his treatment plan.

In other news, 4th of July was pretty much rained out for us. No fireworks, except for the one's the neighbors set off outside. Zoe was happy with that, though, so that was good. I went for my weekly NST this morning. Everything's good with the baby so far. On Tuesday, I'll be 34 weeks and have to have NST's twice a week, which is hard with 2 other little one's and a husband that needs to go to work everyday. But, somehow, we'll make it work. We always do.

die-off

Well, we're on day 6 (or is it 7?) of the diflucan. It hasn't been TOO bad. Holden is definitely displaying some behaviors we haven't seen before. Strange things. He's taken to "scooting" himself across the tile floor. Not all the time, but enough that I've noticed. He's also had a lot of stimming lately with paper towels. The kid cannot see a paper towel without crying for it. He rips it up in little pieces and rips up the little pieces into even smaller pieces. We took away a paper towel yesterday and he freaked. He doesnt normally "tantrum", aside from the typical 2 yr. stuff. But, taking the paper towel away yesterday ... hooo boy did that cause a bigtime tantrum. He started hitting his chest like king kong, and walked over to me and started hitting me on the thigh. Hard. And he's so NOT an aggressive kid. So it was a shock for me. But, then I remembered that Dr. Berger told us that he may do that, he may become overly aggressive, and display behaviors we've never seen before. So, that's my saving grace. It's not normal for him, so hopefully it's only being caused from the die-off effect of the yeast releasing toxins into his blood stream.

He's also doing some not-so-bad things. He's more verbal. No words really, but attempting to communicate. He's definitely saying "dada", "bibi", "mama" now. I thought he was saying these things before, but now, it's a definite. And MOST of the time, he's using them in the correct context. He's also doing well with the signing. If he wants something, he almost immediately signs "please". Or, "drink". He also seems to be more here, playing with his toys and wanting to interact with us. Following his sister around enough that she had to throw him out of her room yesterday. He's also responding a lot more to me when I say "come here", or "stop". That's a good thing.

He found Zoe's perfection game. The one where you put in all the little tiny pieces (shapes) in a certain amount of time. So, he's now learning all of those abnormal shapes and where to put them. He's been working on that a lot this morning. The kid loves shapes.

Totally unrelated - it's hot as hell here. We just went to the park and I couldn't stand more than 30-40 minutes of the heat and humidity. So, so hot. And, I'll be 32 weeks pregnant tomorrow. So much to do in so little time. It's creeping up on me, this August 10th c-section date. I have to call the new pediatrician we're going to be using and pray that she's accepting new patients. I have to draw up the document saying we don't want the new baby receiving the Hep B vaccine at birth. I have to take Zoe school clothes shopping before I'm down and out for a few weeks (her school starts August 21st). And, on top of that, our weekly therapy schedule is now as follows:

Monday - 2-3pm - ABA therapy (home)
Tuesday - 10:30-11am - Speech therapy (home)
Wednesday - 2-3pm - ABA therapy (home)
Thursday - 10:00-10:30am - OT (clinic)
Friday - 11:30 - 12noon - Speech therapy (home) AND 2-3pm - ABA therapy (home)

Oh, and on top of that, I start twice weekly NST's for this pregnancy this week. Starting on Thrusday @ 7am. Fun.

But, we're hanging in there!

DAN! Doctor Appt - 6/18/07

On Monday, we took Holden back to Tampa to see Dr. Berger. It was his second appointment. He explained Holden's urine and stool sample results. The way he explained things to us is that there are kids he sees on the spectrum who's test results are a "slam dunk". Meaning that the results are "clear" and he knows exactly how to treat them. Then, there are kids who's results are absolutely normal. Holden falls within the 20-30% of kids he sees where the results aren't necessarily BAD; but there are enough abnormalities that require tweaking in order to get his system ready for any kind of heavy metal detox.

Updated treatment plan:
-continue epsom salt baths (night sweats are completely gone now; and this will help continue to replinish his sulfate levels that will help with natural detox).
-continue fish oil daily
-begin 30 day course of diflucan for overgrowth of yeast.
-4-5 days after beginning diflucan, we will start Factor-4 daily to help replace bifidobacter (a "good" bacteria that he's lacking according to his stool sample).
-4-5 days after starting Factor-4, start buffered vitamin C (lacking according to urine results).

Holden also had blood work drawn. They drew 6-7 vials. It was hell, yes it was. They will test for basically everything known to man. Routine stuff - CBC, kidney function, etc. They will also be testing for testosterone levels. Seems that recent studies show that kids on the spectrum have higher levels of testosterone (explains why more boys than girls are on the spectrum in the first place). They will test for zinc levels, copper levels, amonia levels. They will also test for Holden's natural ability to detox his own system.

With these results, we'll have a better idea of what we also need to correct before beginning any type of chelation treatment.

Dr. Berger explained something called the "die-off effect" while on the diflucan. He said that he sees maybe 2-3 kids a year who go through this. It's an extreme reaction to the yeast dying off while on the medication. The yeast will release toxins into the blood stream and cause an adverse reaction. He said that a few things could happen and we may notice them in the next wek or so after starting the diflucan. 1.) we may see him doing things he hasn't done before - new "symptoms" of autism. He may not sleep well. He may be cranky and upset. 2.) we may see him slip into his own shell. Not verbalize at all, and sleep pretty much constantly. or 3.) he may have the adverse reaction mentioned above as the "die-off" effect. He said that if he does have this, he will become VERY aggressive and out of control. If this happens, we're to call his office and they will give us the dosing of liquid charcoal that will help bind the toxins together and will reverse the symptoms within 24 hours.

I'm hoping and praying #3 doesn't happen.

more withdrawls? ... and moving

We've made it to day 5 of the FULL gf/cf diet - both dairy and gluten-free. Yesterday, Holden woke up with really red cheeks for some reason. No fever. Just red cheeks and looking exhausted. The best word I can think of to describe him was ... "weepy" looking. When he woke up today, the cheeks were back to normal, but by 2:30 this afternoon - they're red again. Not as red as yesterday, but red. I don't know if this is a symptom of the withdrawls from the dairy and wheat? Who knows. I'm watching to see what happens. And we have an appointment with his doctor on Monday @ 9am.

We're moving tomorrow. I'm so not excited about this. I hate moving, with a passion. I just want to own a home. Really. That's what I really want. But, that's not going to happen, at least not for a few years. We're signing a 12 month lease. And once that's up, we'll probably move. Yet again. And this time, we're thinking about Dallas. Dietrich's twin brother and his wife are there. We went last Thanksgiving and I actually like the area. So, maybe. Either way, I hope we only have 1 or 2 more moves for the rest of our lives. Cause I hate this shit.

Good thing is, Zoe's friend asked her to come stay at the beach with her for a few days. Her friend's family rented a condo in Port Orange / Ponce Inlet. I took her this morning and dropped her off. And yes, I already miss her. She won't be here for the move, so I tried explaining to her that when she comes back, she'll come back to a different house and neighborhood. It will be interesting to see how she responds.

Anyway, back to packing. Ugggg.

GF/CF Diet

The doctor recommended we try the GF/CF diet for 3 months. I was hesitant because Holden doesn't have a lot of the "digestive problems" that I hear other kids on the spectrum have. But, after talking to some of the other moms who have children either on the spectrum, or that have fully recovered, I realized that it's not a matter of allergies or just sensitivities. Because of the higher level of toxins in our kids, they're unable to breakdown or digest dairy and wheat products. These leak through their intestines and cause peptides, which turn into opiates and affect their brains. Thus, the reason they're not able to learn as quickly as other kids. And, it can cause the "high" feeling for them.

So, we're trying it. Last Tuesday, I took Holden off of dairy. Cold turkey. Tuesday night, he went to bed at 11pm, and got up at 5am (and many times in between). He took a FOUR hour nap on Wednesday and then went down Wednesday night at 8pm. He was up every hour that night. Whining. I would try and give him his sippy cup (which normally would quiet him back to sleep) with juice and water mixed - didn't want anything to do with this. He would take a sip, throw it across the room, and then cry. We were up at 5am Thursday morning for good. Both nights (Wed & Thurs), he had massive night sweats. The bed was soaked. Thursday, his eye contact was horrible. He wasn't responding to me as much as he normally does. He was in his own little world. I called Dr. Berger's nurse, who called me back on Friday and assured me that this is all par for the course. He was going through withdrawls, and that is actually a GOOD sign because it means that the dairy was affecting him, and affecting him in a negative way. It's like a druggie detoxing off of drugs.

His eye contact improved by Friday and his sleep did, too. He was pretty much back to "normal" and became more vocal. Still no "real" words, but it's still as if he was trying to communicate with us more. Coincidence? Dunno.

I planned on taking him off of the gluten next week - after we move. But, we went to Chamberlains and Whole Foods on Saturday and I decided to go ahead with the gluten-free portion of the diet. They actually have some good stuff! So, today is Tuesday and we're on day 3 of no gluten. Not sleeping well, and the eye contact is back to minimal. The night sweats aren't as bad as with the dairy, but the responding to his name is awful. Yesterday, his ABA therapist mentioned how much different he seemed - in his own little world again. Kind of "out of it".

It's hard. I'm trying to stay positive and I keep telling myself a million times a day that this is just part of it. That his body is trying to regulate itself. Get used to being without it's drugs. His brain is adjusting. Now I understand why parents give up on the diet so quickly - it's hard to watch your child going through this. It's almost as if they seem "worse" and their symptoms definitely seem worse, but I'm told to stick it out because once you get through this part of it - you'll see the improvements.

I'm hoping and praying it happens soon.

Biomedical Protocol

We had our appt with Dr. David Berger in Tampa a few weeks ago. Here's a timeline of what we've done so far:

May 18th - 1st appt with Dr. David

May 19th - started epsom salt baths (1/2 cup per bath) & cod liver fish oil (1 tsp.)

May 21st - stopped cod liver fish oil (supposed to wait until he's been in the epsom salt baths for 1 week before starting, so I stopped to get things back on track).

May 25th - started cod liver fish oil again (1.5 tsp., increasing to 2 tsp.)

May 27th - started NuThera hypoallerginic vitamins (without A & D). 2 capsules per day, mixed with milk or juice.

May 30th - gathered stool and urine samples for labs. Sent in Fedex.

Dr. Berger thinks Holden has a sulfate deficiency, based on a few of his symptoms that suggest it. His symptoms include: night sweats, bumps (or rash) on the back of his upper arm, and the tips of his ears are more red than his cheeks. He explained that our bodies need sulfate to be able to detox itself from toxins that are in our bodies. The epsom salt baths are supposed to help replinish the sulfate. Based on what I told him, he thinks I may have a "sluggish" detox system too. Which means that it wasn't a good thing to consume a lot of sushi and tuna melts while pregnant with him.

The cod liver fish oil is from Nordic Naturals. It's strawberry flavored. I can't stand the smell of it, but Holden doesn't seem to mind the taste, too much anyway. Dr. David says after 2 weeks or so on the fish oil, we should see an increase in attention, focus, and eye contact. I hope so.

The stool and urine samples I'm sending off today are to test for a huge array of things. Overgrowth of yeast, which he suspects he has from the prolonged use of antibiotics. Holden was on antibiotics for the first 14 months of his life due to hydronepherosis and bi-lateral kidney reflux. I think this urine test will also test for toxins and metals in his system.

Dr. Berger also suggested a few things for me since I'm entering the 3rd trimester of this pregnancy. 1.) he suggested I take 1 capsule of omega 3's fish oil everyday (which I purchased from him). 2.) epsom salt baths. 3.) Vitamin B12 w/folinic acid nasal spray. I haven't gotten this yet, it had to go through a compound pharmacy.

Our followup appointment is June 18th. At that appointment, they'll do bloodwork, which will not be fun. Dietrich will definitely be going to that appointment with me!

So, we're hoping for the best. I've talked to a lot of moms and if nothing else, my son will be more healthy than he ever has. I truly believe that his autism and symptoms were triggered by the vaccines he received, the antibiotic use, and other environmental factors. I hope we can get his body and brain back to where it should be, so that we can begin his recovery.

*crossing everything I have*

"sissy"

I went in to wake up Holden this morning. Zoe came in and got on the bed. She went up to him to give him a kiss and he said "sissy". Her eyes got SO big and she said "mama, he said SISSY". I said "yes, he did sweetie". He smiled. When it was time to take her to school, I told him we were taking sissy to school. We walked into the garage and he said "sissy" again. It just made her day. And mine, too.

moving on

I finally got a few calls from the providers who will be doing Holden's in-home therapy from Early Intervention. Finally. The behavior therapy will start the 1st week of June. I don't have exact dates and times yet, she's calling me next week to give me those. Let's just hope she actually calls. If not, I'll call again. I think they know that about me by now. The Speech therapist called me today. She's going to try and schedule something for as soon as next week, so that would be nice. Should know for sure in a few days, as she "said" she'd call me back. I'm hopeful, she sounds 'nice'.

Holden has an appointment with Dr. Berget in Tampa. He's a pediatrician (M.D.), but he's also a DAN! doctor. I don't know what to expect with the first appointment, but I'm anxious to get the biomedical approach started. I've talked to a lot of moms lately, and the majority have seen improvements in their children. I firmly believe this will be Holden's case, too.

I've started going to a playgroup once a week through EI. It's held at a local church, and even though the 1st time (last week), Holden really just played with the toys, it was nice. He was at least around other people. And, the other kids there were either too young to play with, or weren't interested either. So, they're having another one tomorrow and I'm hopeful that he'll "play". I also met another mom with a 2.5 year old diagnosed with PDD. She's asked us to come over next week for a playdate. Curious to see how the kids react without so many people and toys around.

I took him to the mall playground today. It was great, actually. He did awesome. He was running around, just like the other kids his age - bumping into other kids. Laughing, running, playing. He seemed to really have fun. He was smiling. He even went up to a few kids, but, honestly, I think it was just because he wanted to steal their binkies. Oh well, I'm going to count it as being somewhat social! He didn't avoid them, afterall.

Zoe's almost out of school. She gets out at 1pm on Friday, Monday and next Tuesday. Then she's done for THREE whole months. School starts late next year. August 21st. I can't believe she'll be in the 3rd grade. Wow, how time flies. She's such a good kid though. We are so lucky. She's beautiful, smart, nice, polite, and respectful. I can't tell you the number of times that adults (kid's parents, or just people we pass in the supermarket) have told me how "polite" she is. It's so good to hear coming from her peer's parents. I've mentioned to Dietrich that I actually would prefer her be more polite and respectful to other people and their homes, than to us! I tell her every day how much I love her because I just don't want a day to go by without her knowing how much she's loved.

Lucky, is what we are.

And, here's a picture of the little guy in-utero. Today, I'm 26w1d.

Early Intervention & MORE progress

Everyone tells you "you're doing the right thing by getting your son help while he's young" and "early intervention really works!".

Well, if I could get a therapist to call me back, then I might agree with them. It's been almost 3 weeks since Holden's evaluation and services were approved. 3 different therapies: at-home speech (2x per week), at-home behavior (3 hours per week), and behavior/daycare environment (3 hours per day). Funny thing is, the 3 hours per week of home behavior therapy goes away once he gets into the preschool/daycare environment. But that's beside the point. Anyway. I've called both consulting companies for the speech and at-home behavior therapy. I'm now being told that he's been "assigned" to a therapist, so the therapist will call me back to schedule an initial appointment and his weekly therapies. No call. No one has called. I've called every 2 days, asking for updates. Yesterday, I was told that the speech therapist that he's been assigned to just happens to be out of town this week and "will be back sometime next week". Meaning that she'll have to play catch up and probably won't be able to call me until the week after, and then not schedule an initial appointment with us until the following week. So, yeah. Probably at least another 3 weeks until we can get in for speech. The at-home behavior people tell me he's been assigned ... just have to wait for the therapist to call. I called for an update yesterday and left a message. No call back yet. The daycare/preschool ABA thing - they don't have an opening right now and it may be as late as June/July before then do. Which really means August/September in english. I am frustrated people. Everyone tells me what a great job I'm doing getting him into Early Intervention so "early". Well, if I'd waited another 2 months, he would be turning THREE before they made any appointments, and he wouldn't qualify any longer. Every DAY that goes by, I get a little more pissed that no one's taking me seriously.

Progress. This is what keeps me going and helps me have a positive outlook . Holden's saying "mama" now. I mean, he said it before - but stopped when he lost all language. BUT, he said it again. And he keeps saying it, although I'm not sure he is using it in the corrrect text. He did look at me once and said "mama", so I know he used it correctly at least 1 time. He's also starting to imitate me. I stick out my tongue, he sticks out his (I think just to lick me really, but still, I'll take it!). About 20 minutes ago, I took his binky and held it out of reach and tried to make him say it - or at least make the "ba-ba-ba-ba" sound for it. He looked at me when I said "ba-ba-ba-ba" and he repeated the sound. He's NEVER done that. I take that to mean that he's more aware and if I can get him to imitate sounds - maybe speech and language will follow. That's my goal anyway.

We went to visit my mom over the weekend. Zoe and Dietrich were out of state, so it was just me and Holden. We went to my aunt's house. Holden was playing on the floor and she said "he just looks like a normal little boy to me". It felt good. Because, I've always said that if you didn't know the signs, you would look at him and just think he's like any other 2 year old. He was very "social" with them, too. And he's not around them much, so it's not because he's used to them. He took my aunt's hand and brought her into their kitchen to ask for a drink. I was shocked that he took someone else's hand but mine.

After we got home from our little trip away, we stopped at the grocery store. We were standing at the deli counter and a dad came by with his little boy in a shopping cart. Holden looked at the little boy, stared at him practically, and watched him go by. He normally doesn't notice other people, and especially kids. When he did that, my heart smiled.

Today, while watching the Wiggles on TV, they were running in place, singing a song - and I looked and Holden was watching and running around like they were. He was imitating them. He's never done that before.

So, although I'm dealing with a crap system that takes 2 months to get services for my son who needs them - I still see the progress he's making and it makes me happy. I'm playing the role of "mama" and therapist right now, and of course I don't mind. I'll do anything to help him. But, sometimes I'm scared I'm not doing things right. I just need some guidance, and it seems almost impossible to get.

to vaccinate or not to vaccinate

Vaccinations are a touchy subject, especially within the autism community. I'm figuring that out. Since Holden's symptoms came to "light", I've done a lot of researching online. I've talked to a lot of moms who have gone through, or are going through, the same thing I am. I think it's one of those situations where you have to talk to someone who knows what it feels like.

Anyway, I had a lot of reactions when realizing Holden had problems. I was scared. Scared that I couldn't raise a child with special needs and do all things appropriately for his development. I was anxious for his future. Would he ever go to school and have friends? Would he be able to live on his own? Would he get married and have a family? I even went through a grieving process. I felt like I'd lost my child, even though he was right there in front of me 24 hours a day. He was here, but not really "here". And he had been. He had normal development until around 15 months of age.

Research I've done online suggests that the majority of these kids do just as Holden did. They develop normally for the first 15, 18, 22, 24 months of life. They're happy. They reach their developmental milestones. They call you "mama" and "dada". They dance. They sing. They love. Then, gradually, it's all taken away in a matter of 6 months. So, my question was this: WHY do they develop normally and then gradually fall victim to autism? Research shows there's a high probability there's a genetic component. I can accept that. But, another question: If it's ONLY a genetic component, why isn't it evident earlier? Why do they develop normally and then lose function? I'm not an expert, and I know I haven't seen all of the research and evidence out there, but it just seems logical that there's some kind of environmental trigger. Right? Something must set this thing off in our kids. A lot of people are born with genes - such as the breast cancer gene. Do all of those people develop brease cancer? No. Why? Why not?

There are a large number of parents who feel that vaccinations may be one of those environmental triggers that set our kids down the lonely path of autism. Or, not vaccinations, but rather the preservatives found in vaccinations. And, also, the amount given to our children and how much it's increased in the past 20 - 30 years. It's a strong argument, and one that I can't ignore. I wonder about it all the time. I wonder because with Zoe, everything went as planned. Vaccinations were given at well baby checkups. She may have been cranky, but that was the extent of her "reactions" to these shots. I remember so vividly Holden's MMR vaccine at 15 months. I even distinctly remember him being given the shot in the docs office. He had a terrible reaction and for 3-4 days after receiving the shot, he ran a fever of 103, 104 (even with motrin and tylenol to reduce the fever), he didn't eat, he didn't even cry much. He laid there in his pack n' play and I remember checking on him constantly. He just looked so miserable. I assumed it was "normal" and that some kids just have worse reactions than others.

That may have been the case. But, doing the research and reading about it on sites such as http://www.generationrescue.org I can't help but wonder if the vaccinations may have been a trigger that caused his decline in development at that stage of life. So, out of curiosity, I checked his shot records this weekend. I did it because a lot of parents in forums online said that thermisol was phased out of vaccinations in 2003. Holden was born in 2005, so that means he was "safe" from the mercury and other heavy metals that had previously been in vaccinations, right? His shot records have the date of the vials recorded on the chart. The oldest vaccination he was given was dated 1998. The MOST RECENT vial was from 2001. He received TWO flu vaccinations (the same shot) because the refrigerator at his pediatricians office stopped working on the day he received his first dose - so in order to make sure it was "effective", they re-did that shot. From what I've heard from other mothers, flu vaccines have one of the highest levels of mercury. He just turned 2 on April 10th and he's had no less than 15-20 shots to date. I can't help but wonder what that's done to his immune system, seeing as it's not even developed yet.

It's a debate that I personally think will wage on forever. Even if evidence is found that these vaccinations ARE in fact an environmental trigger for these kids who are already pre-disposed to the autism gene, it will never be allowed to go on record. Pharmaceutical companies are way too powerful to let that happen. Instead, we will always wonder and until the "old" vaccinations are truly phased out of our children's lives - we'll never know if the numbers will decrease without the preservatives that are in the vaccinations.

I've chosen to take Holden to a DAN! doctor within the next month. I want to test his levels of heavy metals and toxins in his system to see where they stand. If his levels are high, I'll go through the DAN protocol and hope and pray that it helps his symptoms and that we see an improvement once his body rids the metals and toxins. Our new baby will NOT be vaccinated - not until we know more, or until he's 4 yrs old - which ever comes first. It's a personal decision on our part, and I think it sucks that I feel as though we're sometimes judged for choosing this as an option for our child. But, that's just it - it IS our decision and we'll do what's best for our family. No one else will. Because, in reality, who else cares enough to do what's best for our family and our children? They don't have to live with the consequences.