slacker

I've been slacking lately, keeping up on things here. Actually, I've just been busy as hell. Dietrich's been traveling NONSTOP for the past few weeks with work and I've been trying to be a single parent and it just sucks.

So, here's an update on everything:

After a horrible week last week, Holden's been WONDERFUL this week. I don't know what brought about the change. The only things I've done different - I backed off of the Taurine, and I did a DMSA suppository challenge test on Sunday. But, as it always seems, anything he has a period of regression, he always comes out of it better than before he went into it. One of the pieces of the puzzle I guess. His therapist said today that he's done great all week. He even initiated play today for the 1st 15 minutes of his session. He went into the ballpit room and played and worked in there without any problems or wanting to leave that room for 15 minutes. She said he also initiated going into another room (he has problems with transitioning from 1 room to another at the clinic) by going up to a door and saying "open". When I got there to pick him up, he looked at me and said "pee". He kept saying it over and over and then laid on the floor. He's done that twice this week at home and it didn't occur to me that he would know he needs a diaper change. But, after it happening again today, I'm convinced he's telling us he needs a diaper change! He's also looking into my eyes a lot this week. Almost as if he's really studying me. Doesn't make sense, I know, but he's really looking at me. So, it's been a good week for Holden.

I took Zoe to the GI doctor on Wednesday. She's still having episodes of nausea / vomiting. The last 2 episodes (last Friday and today) have just been nausea, thankfully. The doctor brought up Cyclical Vomiting Syndrome. She said the only way to diagnose it is to rule out EVERYTHING else. So, we're having an MRI done today (as we speak, her dad took her) to make sure nothing's going on neurologically. She has loads of bloodwork that we need to do and stool samples and urine tests, and I have to schedule an upper GI. Once all those are complete, whenever that is, we'll have a more clear picture of what's causing it. She's such a trooper though, even when she's sick.

Jackson's becoming quite the little person. He's smiling and laughing and trying really hard to walk. He also says "mama" and "dada". More "dada" than anything else at this point. He's feeding himself little cookies that I break off into small pieces. Crazy how fast they grow up.

As far as our move to Dallas, we should know something by this time next week. Dietrich's final interview / presentation is on Monday. The other person that's up for the job has theirs on Tuesday, so they want to make a decision by Wednesday. Either way, we know that whatever is meant to happen ... will.

TGIF?

I hope Friday is better than Monday, Tuesday, Wednesday and Thursday were this week. Holden is out of sorts. He's screaming and crying at ABA. He's having MAJOR issues with transitions there. Changing therapists or even rooms, he's having meltdowns. He's stimming like crazy. Today, it was walking past the TV (looking at the different angles) down the wall of the playroom, and back. Over and over and over again. Drives me insane. Still mouthing everything. Chewing the binkies that he has left. Chewing on his shirt all the time.

God, please let this be a phase that will go away soon. The last things I've started are the Minerals and Taurine. Going to talk to Dr. Berger about that and see if either could make such a difference?!

On a "lighter" note (not really, but still), we got the DMPS and EDTA challenge results back. DMPS wasn't impressive - did pull some metals. Lead being the highest, but not elevated. Did pull some mercury, but again, not a lot. The EDTA challenge test pulled both lead and mercury in the orange. From what I've heard, EDTA is notorious for pulling lead ... but not mercury. So, that's good news. I have one more challenge (DMSA) and will do that this Saturday. Our next DAN appointment is May 1st and we'll go over all the challenge tests and decide which chelation agent to use.

So, anyway, please let me be thinking TGIF tomorrow morning!

great weekend, but now - wtf?

We had a great weekend. My mom came over to stay with us. Saturday, we took the kids to a new place in town called Bounce. It's really just a place for kids with sensory issues. The kids loved it. Then, we went to the circus. Kids loved that, too. Sunday, we went to IKEA. Kids didn't love that as much as the adults did. Holden was very cuddly and loving and even reminded me of a "typical" kid most of the weekend. He even wanted attention from my mom while she was here - and normally he could take it or leave it. He really did great, all around. Much better than he has been in recent weeks.

Last night though, it was hard to get him settled down. Once he went to sleep, we took him up to bed and he was okay until around 11pm. Then it was up and down and up and down. He was just really whiney. He had a wet diaper (and bed, and clothes) at around 5am so I had to get him up. He had a meltdown (I would, too, if someone took all my clothes off and woke me up), so Dietrich took him into his room and laid him on the bed. He watched TV until I went up to get him at 7am. He had ABA this morning and he just had a really hard time. His vocals were off, his crying was pretty much non-stop. He just had a tough time this morning.

I'm thinking it's the lack of sleep. He normally sleeps anywhere from 10-13 hours a night, and last night, he got maybe 6-7 hours. I'll watch him and if his behavior doesn't improve in 2 days or so, I'll call Dr. Berger to see what he can suggest. God I hope it gets better soon!

THREE

no. really?????

Could it be true?? Let's hope so!

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY

For release: APRIL 1, 2008

AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org

CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.

“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.

The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”

“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”

For more information about autism, visit www.aap.org.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)

true joy

Today Holden was at the clinic for ABA. I usually drop him off and run errands and come back 2 hours later to pick him up. Sometimes I stay in the waiting room, sometimes I go back and watch so that I can learn. Today, I went in to pick him up about 15 minutes early and sat in the waiting room. He came out the door in the little flintstone car he likes so much and I didn't say anything. I wanted to see if he would notice me. He did more than notice me. He turned and saw me...smiled with those dimples of his, got out of the car, said "mama!!" and came over to give me a hug. I can't even begin to describe the way it felt. You wait so long, and then one day it happens. You finally know that he realizes you are mama. And he loves me. I could see it on his face and how excited he was to see me. I'll never stop fighting to bring him back to us.

good day!

The new yeast medicine (Sporanox) must be working. Holden's having a great day today. A far cry from the past 2 weeks. Not even ONE tear or tantrum this morning at Quest. No problems transitioning from outside to the therapy room. His therapist said he did great. Notes from therapy this morning:

-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.

-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).

yay!!!!!

holden

I spoke to Dr. David last Thursday evening. We're switching Holden from Diflucan to Sporanox. I think the yeast is giving him a tough time. He's still extremely stimmy, unfocused, and hyper. His hand is down his diaper constantly. Dr. David said to expect a tough weekend, due to dieoff, if the new anti-fungal works. Boy he wasn't kidding. Holden was up last night until 10:30, when he finally fell over and went to sleep. He was a little maniac, extremely hyper. I even tried activated charcoal and he was STILL all over the place. A little less hyperactivity, but still going nonetheless. We'll see what today holds in store for us.

I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.

We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.

He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.

zoe

Her EEG came back normal. She hasn't had another 'episode' since the last one almost 2 weeks ago. Maybe it was a fluke?? I hope so. She's on Spring Break this week, so she gets a well needed and deserved break!

a lot going on

Since my last post, Holden has had his 2nd IV DMPS session. He seems to be tolerating it well, I think. Some things we've noticed that he also did after the 1st IV - his appetite seems to decrease for a few days (which is not normal for him), he's a bit spacey, and he's very stimmy. Once all of this cleared up last time, he made some good progress and started doing things we'd never seen him do before. Good things. So, we'll see how the next few days go.

I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.

speaking of roller coasters

You know how I said autism is a roller coaster ride? Well, here we go again. I posted that last night on here. This morning, we went to ABA. I sat in on the program today because I wanted to see how he was doing. His therapist told me that they were going to be changing his programs/goals, because he's mastered most of what they started with just a few months ago. And he's moving so fast with the echoics, they need to create a new program. Now THAT'S the kind of roller coaster ride I like!!!!!

regression

I hesitate to title this post "regression". Holden's doing great still, esp. with the verbal imitation. He will pretty much at least TRY to say whatever you tell him to. It's clear that it's just not easy for him to get the words out - he will make a sound, and it's also clear that he thinks he's saying what you told him to say.

The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.

At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.

I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.

So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.

Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.

Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.

video worth watching

http://www.youtube.com/watch?v=AsHOR-PNdjk

real imitation - verbal

You know, looking back about a month or 2 ago, I think I was just really hopeful. Holden would occassionally imitate a sound, or would just come out with more sounds on his own. I thought to myself ... "he's improving, he's really improving!". But, today it just a whole other level. This morning in ABA, they told me he was more verbal than he's ever been. They were able to get a number of echoics from him. Not just 1 or 2, but like 4 or 5, which is huge. So, then he had speech and she hasn't seen him in over a week. She commented on how she couldn't believe the difference in just a week.

And it's true. It's crazy. Now, I can with-hold things like his drink (cup), his binkie (bee-bee), and anything else I want and ask him to say something and he does! For the most part anyway. For example:

me: "say mama"
Holden: "maaa-maaa"

me: "holden, say ba-ba"
Holden: "ba-ba"

me: "holden, say eeeeeat"
Holden: "eeeat!"

He's also doing a lot more gross motor imitation. Things he hasn't been shown before. When I ask him to show me his ear (they've been working on head and nose), it takes him a minute, but then he points to his ear.

I don't know what it is. As usual, it could be a combo of things. I honestly think that the chelation IV we did in January got the ball rolling. Then, I stated TMG about 2 weeks ago and I'm just now up to the therapeautic dose. I think that has got to be what's kickstarted his speech as much as it has.

To see improvements like this ... real progress. I can't tell you how good it feels. I'm crossing my fingers and toes and hairs that it will just continue.

"Cup"

Holden was sitting on my lap last night before bedtime. I had his sippy cup in my hand:

Holden: "cup"
Me: "Yes!!! CUP!!" I handed it to him.
Holden: "cup"

This morning while waiting for his therapist, he went to grab his sippy cup out of his bag and I stopped him. I looked at him with it in my hand and said "cup". He looked at me in the eye and said "cup", with a huge grin on his face. Of course, I gave him the cup!

So far, with the Baby Bumblebee video, he says:
"cup" (obviously)
"cow"
"car"
"ball"
"baaa" for bottle

starting TMG

I heard about DMG and TMG from a friend of mine. She said she's talked to a lot of other parents and kids have seen great improvements by starting one of these. TMG is DMG with an extra methyl group added. Or, that's how I understand it anyway. Some kids have seen good progress with speech and since speech is going very slow with Holden, I decided to ask Dr. David if we could try it. He emailed me back with the doseage info and we started 2 days ago. Apparently the therapuetic dose is around 1000-2000mgs per day. I bought the 175mgs. capsules to start him because we like to start things slow. I'm starting with 1/2 cap twice a day for 3 days. Then increasing by 1 capsule every 3 days, until we reach about 1000mgs. per day.

As with everything and autism, it's a crap shoot. What works for some kids doesn't work for others. What doesn't work for other kids works for yours. If I don't see any improvement at all on the TMG, I'll stop it. So far, he's up to taking:

-Vitamin C
-Calcium
-L-Carnosine
-NuThera Multivitamin
-Folinic Acid
-MB12 shots
-Nystatin
-Cod Liver Oil
-Licorice Root
-TMG
-Factor 4 probiotics
-Epsom salt baths every night
-Glutathione cream

And, almost all of those have to be given twice a day. So, the poor kid has nothing to eat or drink without having some sort of supplement in it. He's good though - doesn't bat an eye. He proably would if I didn't put anything in his juice! He's think it doesn't taste "right" by now. Ha.

As far as progress, he's doing well. He's babbling more. Trying so hard to talk. He has developed a sensitivity to loud sounds. He never had this before, so I don't know if it's a problem, or if it's a good thing in that he's becoming more aware of his surroundings, instead of being in his own little world. I can't run the blender or vaccum without a freak out/crying session. He calms down immediately when it's over though. And he doesn't cover his ears, he just cries. Like he's scared. He's even a little "iffy" when the microwave's on. I'm going to discuss with Dr. David next week when we meet with him to discuss chelation. Our appointment is on the 20th.

IV chelation challege results

We got Holden's results back yesterday from the IV chelation challenge we did a few weeks ago. The pretest (which is urine collected randomly) showed low levels of lead, and no mercury at all. There were other things, but lead and mercury are the ones I looked at. The post test (which is the urine collected for 8 hours after the IV chelation) showed lead levels "high", and showed mercury. The mercury wasn't "high", but it was there, and it was on the higher end of "within normal limits".

So, I'm not doctor, but I'm assuming this means on his own, he's not excreting toxins on his own - or at least not as much as he should or could. Whereas, the chelator has helped him excrete high levels of lead and also some mercury. Our appointment with Dr. David isn't until the 20th and we'll discuss ongoing chelation at that time. I'm hoping to start him on suppositories soon, and do 1 IV per month. Hopefully this will pan out and we'll start to see continued improvement.

I don't know if it's just me, or if it's reality, but since this 1 IV we did, I've seen improvements. Who knows, maybe it's just everything kicking in and has nothing to do with his body getting rid of some of the metals. Or maybe it does have something to do with it. In this game, you never know. It's always a guess. Whatever it is, I'll take it.

meow

In our continued effort to get Holden to imitate, something posessed me to make the "kitty-cat" sound the other day in the car. Boy did that get his attention. So, now, about 20 times a day, it goes something like this: "Holden, what does the kitty-cat say?". Pause. I say "meeeeeyoow". He looks at me, opens my mouth, watches me say it again, and then says "owwwwwww". There you have it, imitation.

We're also working on ducks (quack, quack, quack), and cows (moooooo). We'll see how long that takes.

interesting

http://www.cnn.com/2008/SHOWBIZ/TV/01/29/pediatricians.tvshow.ap/index.html.

repeating

Not everything, mind you. Not even close to everything. BUT, he IS repeating some things on TV. Mostly on the Baby Einstein DVDs, which I thought were really some type of devil-spawned DVD collection because they became such an obsession with him early on. But, if they're going to help him get some words out, then so be it. So far today, I've heard "kitchen", "chair", and "ball". And, while watching Baby DaVinci, he imitated sounds that the puppets were making. They were yawning, and he does it right after them. Everytime. So it's NOT a fluke.

As painful for me as that IV was 12 days ago - I'm ready for another!