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!

what's going on???

I have no idea, but I'm not changing anything. I don't know if it was the IV chelation from last Thursday, or if things are just starting to "click" for Holden. He had a great week, doing things I haven't seen him do before. His ABA therapists all said he's making a lot more sounds. Not noises, but actual sounds. 3 days in a row, I caught him imitating things from TV. He was watching Barney once (I know, I know) and I caught him out of the corner of my eye doing something with his feet. I thought "oh, its just one of his dances he's doing". Then I looked at the TV and saw the kids dancing, doing exactly what Holden was doing. They started swinging their arms around and he watched and did the same thing...again. Just yesterday, he was watching a Baby Einstein video and there was a windup toy on there that would jump...walk, then jump again. Holden stood in front of the TV and jumpped every time the toy did. And smiled. I also heard some verbal imitation while he was watching a video, too.

Gross motor imitation is what we've been focusing on in ABA for him. It seems to facilitate verbal imitation. He's done GMI on occassion, but most of the time, its been prompted. This week, the times I caught him doing it, it was NOT prompted at all. Completely independent. I wish I would've had a video camera when he was doing it ... but I hadn't expected it, so I wasn't prepared.

Was it a fluke? Maybe. But I don't think so. Was it due to the little bit of detox that the one IV chelation would have accomplished? Possibly. Or, is it because he's started ABA thearpy 4 days a week this past week? Could be. Whatever the reason, I'm not stopping any of it.

challenge (provocation) test

Holden had his 1st challenge test today at the DAN doc. He was given 450mg of Glutathione and then he had 50mg of IV DMPS. It sucked. I had to hold him down. Normally, I'd make Dietrich do the holding down, but he is out of town for work. So, I had to do the dirty work. She had a hard time getting the vein in his arm, but FINALLY did enough to get the blood draw we needed. We're also checking his hormone and cortisol levels. And checking to see if the TD Glutathione is helping him, so we're checking those levels, too. Then the vein blew, so she couldn't administer the meds through that one. Had to remove the needle and then poke him in his hand. He screamed and cried and cried and I cried. He looked at me, crying, and yelled "MAMA!!!!" I thought my heart would break.

For 8 hours, we're collecting urine. I'll send it to the lab on Monday and we'll see what comes out.

So far, he's okay. Tired, but okay. We're all beat after today.

the "window"

Jenny McCarthy talks about The Window in her book about her son's autism. I've heard a lot of interviews, too, where she talks about The Window. How we have to pull our kids through this window.

I'm hesitant to type this, or think this, or admit this - for fear that it will go away. But, for the 1st time since Holden's diagnosis, I feel like The Window is at the very least ... opening. We have a long, long way to go in Holden's recovery process, but it feels like we're truly finally making some progress. And, progress that is notable. Not just us asking if it's a coincidence, or asking ourselves "did we really just see that?" and answering with a "nah, probably not".

Saturday, we were going somewhere - to run errands. Holden's been saying "bye bye" pretty consistently for the past few weeks. So, we told him we were going bye bye. I told him to go get his shoes so we could go. I kept talking to Dietrich and then realized as Holden walked around the corner and back into the room - that he had his shoes in his hands. Not only did he go get them. But he brought them to me to help him put them on. For most people, that's really nothing. Most parents can say to their kids "go get your shoes!" and they will go get their shoes. I've always wondered if Holden understands what I'm saying, yet he's unable to respond. Now I KNOW he understands most of what I say, because he IS responding. For a child with autism, that's huge.

So, yes, even if it's just a crack, The Window is FINALLY opening.

Paper!!

Holden loves paper. It's his "toy" of choice. He likes to shred paper, specifically. And hold it in his hand. Not just any paper, but paper towels or tissue. Regular paper you draw on just won't work. On New Years Eve, we spent the afternoon and night at a friend's house. Holden was really good. He crawled up in the chair with a few people and just hung out. He also played with his paper and when we were in the kitchen, we all heard him say "paper". Not just once, but 3 times. And it wasn't just me, but everyone else heard it too.

So, no more flukes. He's talking. It's not consistent, but he's talking. In the past week or so, we've heard "paper" (more, and again and again), "bath", "bubba" (for Jackson), "sissy" (for Zoe), "wawa" (for water). And it's great. He's not consistent, like I said, but we're hearing more sounds at least. And actual words. I really think his receptive language is improving the most lately though. While at our friends house on New Years Eve, he had a long sleeved shirt on and was sweating a little (damn Florida weather). I said to him "honey, do you want me to change your shirt and put on something cooler?" Not expecting him to actually SAY anything or DO anything. But he walked over to his bag, pulled out his other shirt, and laid it on top of the bag. And there's no way it could have been a coinidence. He's also listening to me more when I tell him to "come here". Or telling him to "get down". He's taken to crawling up on the trunk in the living room next to the TV. So, I think his receptive language is really really improving right now, which is awesome.

In other news: Zoe started her new school 3 days ago. She now has a total of 2 "really good friends", she says. I love that kid, she's so great. I was worried about her the 1st 2 days, but today she did so good and I know that we're over the worst of it. Thank God!

Tomorrow is such a full day that it's 9pm and I'm going to bed. We have ABA at the clinic from 9-11am, OT at the clinic from 1-1:30, walk to pick up Zoe at 2:30, and back for in-home ABA from 3:30-5:30. I'm tired just typing it out. Good night internet!

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!