Prep for Dr Appt next week

I must be the only person who starts preparing for the doc appointments a full month in advance. When I got the email today asking me to fill out and return the paperwork for D's visit to Dr K next Thursday, I was like... SCORE, its already written:


Specifics for May 6 Dr Kucera appt

1. HBOT – We have a trial appt 5-7. I’d like a formal recommendation to do HBOT from you so I can write it off our taxes. If we see improvement after doing 40 sessions, we’ll do another 40. I have found anecdotal stories online of HBOT increasing yeast. Other than yeasties, which we know how to handle, is there anything we need to be aware of w/HBOT? Anything we should tweak w/the supplements?

2. Dominic’s behaviors and stimming have been off the charts with what we suspect are springtime pollens (hence my request for the histamine level check) What are our options for treating this without resorting to Benadryl? What do you think of Inositol or L-Methionine or SAMe? We’ve done a bit of a Benadryl trial … days that he’s had Benadryl he’s much better focused than days that he hasn’t. [if its not the pollens, then it’s the chelating w/NDF+ that’s corresponded to the time of behavior issues]

3. I really think that Dominic is a sulfur sensitive kid – not only did he have issues with OSR and DMPS, he had a major behavior breakdown after Grandma gave him dried fruit that had sulfites. We also saw huge amounts of stimming the day we did the DMPS provoked urine test (we hadn’t seen this in earlier urine tests). Are sulfur sensitivities cumulative? Is there any way to reduce sulfur accumulation?

4. Our DMPS prescription has expired. Just a note that if we get a new urine test kit at this visit, we need to go ahead and get the DMPS capsule too.

5. Have we tested Dominic’s Thiamine levels lately? There was a study referenced on autismweb.com forums about thiamine being decreased by yeast, and low thiamine levels contributing to frontal lobe abnormalities. http://www.ajnr.org/cgi/content/full/26/7/1668


Summary since Feb. Appt

Things have been pretty even keeled since our early Feb appointment.

Dominic’s stools stayed normal and firm looking until he caught a nasty cold in mid March. He was sick for a week or so, and his stools went back to diarrhea for a couple of weeks. Went back to firm for a couple of weeks, and then back to diarrhea April 21 ish when the rest of the family had another cold. Even the slighted immune response is causing a negative lower GI reaction. The stool test done on 4-11 was at the end of the first post cold funkiness, but it was still much better than we were having in December. Banana’s and prune juice are still daily features – we have noticed if we run out and miss a few days, his stools disintegrate in quality again, so it seems to be a VERY fragile balance. We worked up to a full TSP of the GI Revive 2x per day, and are slowly backing it back down, we’re at ½ tsp right now, and can ramp up/down from this point. My preference would be to ramp down and have it to use as needed in the future.

We’ve been slowly increasing Dominic’s dosage of Liverlife and NDF+ per Bioray’s protocol. We’re seeing a lot more emotion from him, and more personality. We test both his urine and saliva ph first thing in the morning – both are fluxuating between 6 and 7. We’re trying to get the saliva over 7 and the urine to stay closer to 6. While we have not seen any brain fog issues with NDF+ like we saw with OSR and DMPS, we have seen increased behaviors with the chelating/liverlife – a variety of them and all short lived – we added Travacor, Jr back in at 2x per day and that has helped some of the issues, but we’re still working through the others with ABA. (some examples – he randomly bit himself a few times during one week. He hit a therapist one day, he has started pushing if he doesn’t get his way, seems like he’s got a much shorter fuse from zero to really frustrated). My inclination is to finish the bottle of NDF+ and retest him again to see if we need to continue. Bioray’s protocol has you add regular NDF to the combination of Liverlife and NDF+ after you finish a full bottle of the NDF+. We’re also seeing a correlation between needing to give him charcoal for giggly-ness and suspected die off and the day we increase his NDF+ (its generally 2 days after increasing the dose, he has a super yeast die off which is fascinating)

Overall Speech trending is positive – please see charts taken from data from Alpine (these’re for 3 hour windows each day) since we started in June. I’m still looking for the cognitive supplement for a Wow in speech, tho, I don’t think we’ve found it. We do have a nice overall upward trend, and we can definitely see the dip that corresponds to either spring allergens or the NDF+ chelating.

Mands are requests, tacts are labeling and free operant pairing is any vocalization

Alpine parent meeting today

We had our regular monthly meeting with Alpine today. Things are going well. Dominic's been a bit flighty as far as eye contact and verbals and behaviors go at both Alpine and home, which we are figuring is either from spring time pollen allergies or from the NDF+. Either way, its been stabling back out. Every day this week he's had over 200 verbal attempts at Alpine, so thats a positive. i got the raw data from April and my charts are updated. i'll try to get them uploaded tomorrow. definately can see the dip in March, but its coming back up in April.

Still not sure if Dominic will be full time or still part time at Alpine this summer. WE're hoping for full time, and hope we'll have an answer in a few more weeks. ITs dependent upon IEP decisions for other kids at Alpine. We'll see.

OT went well today. Dominic is doing great cutting straight lines, so now we're to move on to curves. Also, he's doing great with line down, now she wants him to work on a line down followed by a line across, making a + sign. His focus and verbals were excellent for her this evening, and she was quite pleased.

HBOT

Hyperbaric Oxygen treatment is one of the high visibility treatments that works really well for a lot of kiddo’s on the spectrum. And it doesn’t work at all for others. There’s a new company in Colorado Springs offering HBOT treatments, and our DAN , Dr K. is their medical advisor. I spent a while on the phone with this company today. Nice guy.

So one of my discussion topics for our May 6 appointment with Dr K is starting HBOT treatments with Dominic.

The way HBOT works, is that it increases the oxygen concentration in the bloodstream significantly enough that it permeates through brain tissue to get to brain cells that may be dormant (or in Dominic’s case, may just be missing synapses). At the around dive 35-40, you begin to see angiogenesis, which is where the body says “oh, there’s a cell here, I should put in a regular blood flow to get it oxygen.” Basically, it reactivates dormant or damaged brain cells which we believe Dominic has.

The idea is to do it frequently enough that its always a progression of how far the oxygen goes in the brain – no more than 3 days apart. We actually will probably try to do this Mon, Tues, Thurs and Sat all summer if it comes to pass (since things will be busy during the summer but MUCH busier in the fall). The chambers are big enough for one of us to get in it with Dominic, and we’d put in a DVD player for him. (aside, the one of us who gets to get in with him also gets some benefits of HBOT, not as much as Dominic will because he’ll eventually have the O2 concentrator mask, but some benefit nonetheless)

One interesting tidbit the guy mentioned was that they’ve seen kids with major gut stuff have lower GI improvements with the oxygen. Something about the gut being a low priority for oxygenated blood in the body? Anyway, it would be nice to see some gut healing as well, since that’s such a fragile balance for Dominic.

We’re going to go see them May 7 and do our first, free dive. The guy said we could borrow his portable DVD player for the first one, and we would likely end up buying our own if this all comes together. (we’ve been talking about one for ages)

Cost wise, its not cheap. But, its not as pricey as many I’ve seen online. Its not covered by insurance, but as long as we get Dr K to “prescribe” it, we can write it off of our taxes. We will get a cut rate for buying a package of 40 dives.

Timing wise, there’s better chance of it being a long term positive for Dominic if we do it while we still have a ways of ABA to go. IE – we get more oxygen to his brain, and then if he’s one of the kids for whom this is a huge benefit, the ABA will work that much better. I’d love to start this in May and do 15 weeks at 4x a week then another 10 at 2x a week. It sounds like its one of those things that you want more intensity at the beginning of the process for deeper healing. So we’ll see. On the internet, the parents who report it works for them, say it works miracles. Those who say it doesn’t work just don’t see anything as opposed to regression.

Weekend snippets

- if ever there was a time I wished I had the camera on me, it was yesterday. We went to lunch at PF Changs to use the gift card I won last weekend (FYI, they have a Gluten Free Menu! and had no problem leaving soy sauce out entirely for Dominic). Dominic had some asparagus. The best way to describe HOW he had the asparagus is to tell you it was kind of like a kid slurping in a spaghetti noodle, but chewing a bit too. Seriously. No hands, a whole stalk at once. We're going to buy some asparagus and see if he'll do it again from home. If so, there will be video. Had us cracking up.

- Today was our end of winter drain the hottub day. So we are filling it back up, Dominic comes outside, looks intently at the water going in, and disappears back inside. He comes back out with a toy boat and proceeds to float it in the hottub. Functional pretend play anyone? I swear if we can get his verbals back, the rest of it he does pretty well on.

- So far so good w/the benadryl. It seems to be cutting the behaviors at home and school reports good things when we use it. He had over 200 verbalizations at Alpine Friday which is on the high end for him.

Updated:
After I wrote this, I caught the boy having a BLAST ... check it out:

This and That

- We are trying something..... we benadryl this week (dye free, hooray), On Monday and Tuesday, but not this morning. Mon and Tues Dominic had excellent focus and words, today it wasn 't very good. The only reason we didn't this morning is that I forgot. Rod gave it to him at lunch, and he had a great afternoon. We may be onto something. We'll try to remember to keep it up in the mornings. This out of focus thing may very well be pollen allergies and high histamines.

- Dominic's all registered for Kindegarten next year. We met his teacher, saw the room, filled out paperwork, etc. I still need to call transportation and work out the bus thing for next year. He'll be picked up at our door in the mornings and one of us will go get him at 12 pm and drive him to Alpine. He'll have lunch with his classroom.

- Out of the blue, he's really enjoying Dora the Explorer (after leaving the DVD alone for over a year, he now asks for it by name. "Dorie...")

- The past couple of days we've seen a sudden upsurge in self amusement - namely with his cars. He's actually playing with them again. Kind of cool.

- I think he's getting the cold that Rod got Saturday and I caught yesterday. We'll see, I'm trying to head it off with antivirals up front.

We went. We Walked. We won a prize

First, i won a prize for being one of the top fundraiser for Alpines Autism walk today!! I was really surprised. Big thank yous to all my donor's. The cool thing is I won that with the majority of my donations being $25 or less. I have some ideas up my sleeve for next year. Hopefully I won't lose the sleeve between now and then.

We dressed for cool weather (it was rainy and 45ish), and Dominic and I got to the registration at 9am. TONS of people there, again another suprise. We hooked up with several friends prior to the walk and Dominic played some on the play ground. Note to self, cool park, try again in non rainy weather.

Then... the giant armadillo arrived. Dominic HATES adults in animal costumes. They freak him right out. So that along with the crowd had him crying for the car. (Pardon the frizzed out hair, rain and i don't get along)



There was a kiddie race before the 5K. I lined Dominic up with the kids and told him to RUN. He looked at me like "seriously, you're kidding right". And walked a little ways. Then came back without running around the track.

We met up with Daddy right before the walk, (he taught a class first), and were about the last people starting. There were several hundred, I'd guess.


Here're Rod and Dominic at the first informational sign:


Here's our friend Dawn who walked with us, and Dominic, at the second informational sign:


Right as we neared the turn around point, we bumped into Dominic's little friend Ethan and his family, so we turned around and the boys did the entire rest of the walk holding hands. Very cute.



We got back to the starting point literally as the radio announcer was announcing that I won a prize for fundraising. Timing was excellent. Then we went to lunch.

The rain has gotten worse, so I'm glad we walked in the morning instead of the afternoon.

Seasonal allergies do what?

We’re hanging in. We are doing more tests this coming weekend to check blood levels of minerals (toxic and essential), see what kind of urine levels of the same toxic minerals we get with DMPS provocation, and probably a stool test.

Yesterday I was reading the Bioray yahoo group, because its always interesting to see what other people are talking about. Lots of the kiddo’s are having behavior issues with this spring pollen season. This makes a lot of sense…The histamines are related to the methylation cycle and levels of oxidative stress.

Anyway, since we’re doing blood work this coming weekend, I went ahead and called Dr K’s office and had them write up orders for a test of airborne allergens that apparently measures the level of whole blood histamines. And while we’re at it, I had them throw in a liver panel to see what kind of shifts we’ve had since we added liverlife.

We’ll do blood work Saturday, and then we may play with Benadryl (which comes dye free now, yay!) and see if that has any impact on his funky behaviors. (by funky behaviors, I mean, non compliance at alpine, lack of focus at d11, and self injurious behavior across the board – he started biting himself a few days ago for no apparent reason).

Whats interesting to me is that we haven’t seen this spring time behavior shift in the springtime before. What I’m reading talks about the methylation cycle which involves B12, Folic Acid, and Homocysteine all being connected to the SAM-e life cycle which is predominately handled by the liver. It’ll be interesting to discuss this with the doctor, because I’m wondering if we should add SAM-e (or its precursor, Methionine) to Dominic’s supplement schedule.