Thursday, May 27, 2010

handwriting, parent meeting, and OT, Oh My.

At the very end of preschool, his teacher sent home a handwriting sample... basically, they write his name in a highlighter and the idea is for him to trace it. 5 times on a piece of lined school paper. On the sample from 5-17, 3 of those 5 were hand over hand and 2 were 100% independent. The feedback we got was that he concentrated REALLY hard to do it.

SO I took that to OT last night and our therapist was OVER THE MOON excited. Very suprised because she's been having a hard time getting him to do lines down and across independently. So she promptly went to try and see if he would generalize the skill and do it for her. And he did. She also commented that he talked his tail off all session, and in a back and forth conversational way. Which is exciting.

Also yesterday was our monthly parents meeting at Alpine. Its not our imagination, May has been a good month. All of Dominic's behavior issues went down noticably enough for them to remark on it. His programs are proceeding along. We talked about this summer, and we're going to continue to focus on the basics until he gets some mastery before moving on - colors, shapes, and letters. I did ask her to add in some handwriting to his fine motor so we can keep that skill progressing. She has not run the numbers yet for May for verbals, but will in a few weeks.

Friday, May 21, 2010

okay, now thats a big step.

So I called home this morning to check in and see how the morning was going. Apparently Dominic was staring hard at the phone, so Rod handed it to him, and he actually said “HELLO”. I said Hello back, and he said Hello again. I said “are you having fun” and he said YES.

To understand the impact of this, you need to understand that he hasn’t even wanted to attempt to talk on the phone in at least 3 years. And even when we’ve tried recently, there’s been no interest, and he’ll say BYE and wander off.

Thursday, May 20, 2010

well those're positive signs....

2 little things that tell us HBOT is doing good things.
(today was session #9)
(remember, the wow point is around 35-40)

1. Dominic's preschool teacher told Rod at the end of year picnic this morning that she really thought if we'd started HBOT a few months ago she would've gotten much further with him - she's seen that much progress the last few weeks.

2. At HBOT tonight, B (the hbot owner operator) told me that from the amount of sweating Dominic was doing (mind you he's got the AC down to 65....) he was detoxing better than many adults.

this and that

Dominic watched Finding Nemo in the HBOT tank on Tuesday. Then we went home, and I went outside to do some yard work. Came inside to find him drying off his arm, wet to the shoulder. And 2 fish were swimming upside down. Near as I can tell, he took the lid off, and tried to get them out like in the Nemo movie. One of them perked up, but we flushed the other one because he had a popped eyeball and torn up fin. Dominic was sad, cried all night when I told him he hurt the fishes. He knew he was in trouble too, and even remembered it the next morning (he got a talking to from Daddy, and the next morning, I could NOT get him to go in and say good morning to Daddy). Since then, he’s been looking for the missing fish. I don’t know how to communicate the concept of dead fish to him though. However, on the upside, its easily the first time that he remembered he’d been in trouble the night before. (for the record, the fish tank lid is now duct taped down. Discussions on if we get a replacement fish continue)

Dominic has a tendency to wake up before us, and turn his light on, then do a search for his missing glow in the dark maggots that he was holding when he went to sleep. Generally this entails stripping the blankets off the bed. So the other morning when I went to his bedroom, I was pleasantly surprised to find him playing with his cars instead.

I feel like we’re seeing a little more independent labeling at home, but that’s so subjective. We are definitely seeing more babbling. I don’t think we’re seeing any interest in conversation, tho. We’ll know more specifics when we see the May Alpine report. He’s still having mostly diarrhea again, am thinking that the yeast killed by the HBOT are rupturing and releasing toxins. Hopefully we’ll be through that soon. Everything I can find online indicates that after the first 10 visits or so, the yeast issues are done. Tonight is number 9.

I ordered a cool laptop lunchbox for Dominic for this summer and next year. I wanted something that wouldn’t require a bunch of baggies, or involve smushed sandwiches. Next trick will be coming up with a variety of Gluten, casein, and soy free meals that have a good protein component and can be eaten cold. We’re going to try a GF pasta salad and a GF potato salad next week. If he likes those, either could have shredded meat added. One day a week will be sunbutter and jelly on GFCF bread.

It feels like we’ve gone from winter straight to summer this week. I just pulled out all Dominic’s long pants and filled the drawer with shorts. He’s still wearing most of the 3T shorts from last summer… even though in long pants he’s a 6. He was a bit distressed over the whole shorts thing this morning, but got over it quickly. He still won’t wear a tank top tho. They completely offend him.

Monday, May 17, 2010

Monday Tidbits…

HBOT visit number 6 is this afternoon. We have 5 scheduled for this week, and 3 for next (due to scheduling conflicts there). I’ve gone ahead and asked that we be scheduled for 5 a week going forward, and we can always slow down if needed. I want to get to that “magic 40” as quickly as possible so that the 40hrs a week of ABA has the chance for best possible impact.


Apparently adding Shanti to a bath that Dominic is already in is acceptable. Adding Dominic to a bath that Shanti is in, not so much. And he still won’t let the dog sleep with him.


This weekend, Dominic watched Finding Nemo. He came and got me by the hand, took me to the fish tank, and clearly wanted me to get a fish out so that the fish could watch Nemo with him.


We’re seeing many cute little things… Dominic has been tucking us in with blankets when we are sitting on the couch. I was still in PJ’s yesterday morning when I’d supervised him getting dressed, and he took me by the hand to my dresser, said SHIRT, and proceeded to get me a shirt out of my dresser. Very cute.


I’m easing back on some of the supplements – we’re down to ½ a capsule a day now of the Travacor, and I’m about to phase it out entirely (it’s the one we add for behavior issues). Once summer starts, we won’t be doing any lunchtime supplements, so we’ll phase out the baking soda, brewers yeast, and milk thistle (he’s full dose of liverlife so we shouldn’t need it), and move the lunch probiotic to dinner. We’re using up the last of the primal defense probiotic and then we won’t replace it. We’re going to phase down the GI revive, slowly, and presuming his tummy doesn’t get upset, we’ll phase it out entirely. Once we get to the end of HBOT, I hope we will have phased the Curcumin down (in theory the HBOT will take care of inflammation with healing, not a bandaid). We’re going to finish the bottle of NDF+ (chelator), and retest his urine toxic metals. I suspect we’ll be fine to end that as well.


The ones I see us leaving onboard indefinitely are the fish oil., probiotic, and multivitamin. Once we’ve healed his gut and gotten rid of yeast (hopefully also w/the HBOT), we’ll try to ease out of the antifungals (GSE) and extra vitamins/minerals (Zinc, P5P). I suspect Quercitin will stay in our repertoire as an antihistamine, and liverlife will stay in the repertoire (tho we may be able to go down to a maintenance dose in a few months). I hope that after the HBOT we’ll be able to reduce our cytoflora dose as well (right nowe, we’re at 8 droppersful a day. I’d love to cut that down to 2).

Sunday, May 16, 2010

Sunday musings.

This post has been percolating for a while... do take the time to go read the links, they will make it make more sense.

A week or so ago, I found this article talking about differences between special needs moms and moms of neurotypical kids. A number of the items resonated with me, and made me see perhaps why it is that I feel like a number of my pre-dominic-regression friends just don't know how to relate to me anymore. So I ended up in a discussion with a friend of mine who has mothered both special needs and nt kiddo's. And she informed me that of course people didn't know how to related, its like asking someone how they like living in Mars, but that I really needed to remember that NT kid's have parenting challenges too. Just a completely different set of them. Her situation was different than mine, but similar enough that I knew she knew what she was talking about.

So yesterday, also at Hopeful Parents, I caught this article which was a different way of looking at the same concept. And it really really resonated with all of me. Especially this quote:

"We're not alone on our path either. There are special needs families strewn all over this trail, walking with us. Sometimes we hold hands as we struggle up a steep incline and sometimes we catch each other as we slide down a scree-littered down-slope."

Its really true, the best support and most inspiraton I've gotten, has been from other moms who've been doing this longer than I have. Its because of them here, here, and here .. its because of the Yahoo Groups on every possible focus I could want with hundreds of parents on them... its because of Holly Robinson Pete and Jenny McCarthy and their willingness to talk and write about what helped their kids even though mainstream medical says they're charlatans. Its because of companies like BioRay and New Beginnings who have customer service reps who are parents who have recovered their children, who are willing to guide the rest of us, and even just be an ear when we are completely freaking out. And its because of mommy bloggers all over who are documenting what works for their kids. Our wows so far have not come from the doctor, they've come from the internet suggestions that resonate with what we know about Dominic - Enhansa, Cytoflora... and hopefully now HBOT.

There's a revolution of parents - known in some circles as Warrior Mothers - out there taking their childrens health into their hands. not dismissing AMA, but taking the initiative... by trial and error. Its kind of scary from one perspective, but its going to change the world.

Friday, May 14, 2010

Preschool wrap up...

We had our very last parent teacher conference of preschool today... If you recall, out our first meeting, we talked percentages of where Dominic's skills were, according to the AEPS test.

we've had some nice improvements over the year:

Adaptive Area he was in the 69th percentile in October, and he's now in the 86th percentile. Mrs H says he's completely typical of a little boy adaptive skills wise (this is dressing, toileting, grooming

In the cognitive area, he was in the 16th percentile, and is now in the 34th percentile. The preacademic skills are starting to come. We're really excited that he'll be continuing to work on them this summer

In the social communicative area, he was in the 15th percentile and is now in the 30th.

In the social area, he was in the 46th percentile and is now in the 56th.

In the fine motor area, he was in the 30th percentile and is now in the 63rd.

In gross motor, he was in the 65th percentile and is now in the 88th. Totally typical 5year old gross motor skills.

So, he made a lot of progress. He has a long long way to go. His IEP goals all showed progress, nothing mastered yet.

I had a nice conversation with the SPED (special education teacher) for next year. She will likely be his SPED all the way through grade school if everything comes together like we expect. She'll be visiting him at Alpine sometime this summer, and uses ABA with the kids she works with. We're expecting a very smooth transition.

Monday, May 10, 2010

Monday updates

The weekend was pretty good. I got the vague impression we were seeing a little more language out of Dominic than we had been, but nothing earth shattering. Today he had the morning off because the rest of his class went to the zoo, but since he had Alpine, we didn't take him. He had a great day at Alpine, his therapist said that in just her her 90 minutes (he sees 2 therapists per afternoon, 90min each) he had 98 Free Operant pairs (verbal attempts) and they were almost all clearly audible tacts (labels). This is particularly impressive if you scroll back a few posts and check out the tacting graph - the max he's ever had in a 3 hour afternoon is 30. I'm going to be quite excited to see the May numbers.

We just did our second HBOT session. It went well - he was thrilled to be there and jumped right in... did decent with the mask - but we had to stop in the middle, deflate, and run Dominic to the bathroom. Yes, we went before. The combination of the oxygenated water and the pressure from the tank is murder on bladders. When we finished the second half of the dive, Dominic did the whole grab his crotch and RUN for the bathroom the second we got him out. It was funny. We went ahead and proactively charcoaled him when we got him home, since he started the silly, yeast die off giggliness in the chamber this time. Apparently after we get him used to the oxygen chamber, we'll add in 10 minutes in an infrared sauna prior to getting him into the HBOT chamber to increase the detoxification of the oxygen (they're funky looking, they look like this) Apparently it comes with the whole 40 dives package.

Then, came home, and got an email from Alpine that they will indeed be able to take Dominic full days June and July. So since they're off the week after the 4th, it'll be 7 weeks of full time this summer. Which is excellent. (and, since we get 2 weeks of vacation per year we don't have to pay for, we're using one of those week for the week that Alpine is closed. Seems silly not to) We're hoping that the combination of HBOT and full time ABA for the summer will be significant.

Friday, May 7, 2010

HBOT update

Dominic's HBOT trial dive today went fabulously. No problems getting him into the tank (portable DVD player = worth its weight in gold). I got in with him, and we both had plenty of room. There are clear portholes in this one, so no claustrophobia for me. It was downright sweltering by the time we were done, and the guy apologized - we were dive #8 for the day and the building hasn't switched from heating to AC yet, so it was toasty. Dominic had no issue wearing the oxygen mask - he wore it probably 80% of the time. The operator was THRILLED by this. apparently most kids just play with it the first couple of times.

part of the protocol is to drink some of this stuff first, and then during and after the dive. So one bottle per person comes with. Good thing it comes with, i can't see paying extra for it.

I brought along the awesome lounger pillow Rod got me when I was pregnant, and it was PERFECT. The operator guy had cushion envy - apparently, he's got some cancer patients who cannot lay down for the treatment, and he thought my pillow was the best he'd seen.

So, we're purchasing 40 dives. We're going to do 5 next week, and 5 the week after, and then evaluate how we want to proceed. Hopefully by that point we'll have Dominic's summer schedule (Alpine has one last IEP that they're waiting on, and if that school doesn't pay for that child for the summer, Dominic will get his summer morning slot for all of June, all of July, and 1 week in August in addition to the afternoons).

3 hours later and i'm still thirsty. No side effects for Dominic thusfar, tho we are expecting potential yeast die off reaction



Thursday, May 6, 2010

Doc Appt update

We had an excellent,. relatively quick (only 90 minutes) appointment with the doctor this morning to review blood/urine/stool tests, discuss current treatment protocol and tweak supplements.

Good news - his gut is improved significantly. We still have high levels of inflammation, but they're down by over 50% from the last test in January. We will continue our stool protocol. We will also continue our bioray Liver Life and NDF+ protocol - we're going to get up to 10drops of NDF+ per day for a month and then retest his toxic metals. We're going to continue using Super Bifido for another month or so to get his Bifido levels higher. We're not going to do another stool test unless things get way worse... the test is $300 out of pocket. He does however, want me to do ph testing of Dominic's poop once a week. *GREAT*. (gag)

Yes sulfur sensitivity is cumulative and unfortunately, Dr K doesn't know how to reduce levels. So it seems I've got some research to do.

For allergies, instead of the benadryl, we're putting him on Quercitin. Apparently among other things, he's allergic to cats like Rod and I. Quercitin is also a systemic anti inflammatory. We're also increasing his curcumin by 50% for the anti inflammatory properties.

Because I noted that Dominic's gut immediately deteriorates with any immune response, that its a fragile balance, we're adding Super Immune Plus back in daily to give him a bit of an edge.

Because Alpine is starting to see the eye contact become a bit sporadic, we are adding in P5P, which is an active form of vitamin B6.

And, I told Dr K we were doing an HBOT trial, could he please write a 'script so that we could get the tax write off. HE said sure. Funny part was that he said, now what to use for a Dx. I said "how about encephalopathy". He said "oh thats a good one". So we've got a 'script for 40 dives. if they go well, i'll get a second script and we'll do another 40.

Our next appointment will be in August.

We're also going to add in TMG for speech ....

We're backing down on Zinc (cutting in half), and Vitamin C (there's a hefty chunk in the P5P. We will stop the Bifido after the next bottle, and expect to back off of the Travacor in June if we can get his behaviors stabilized by reducing inflammation with Quercitin and HBOT.

Fun Stuff.