I’m not quite sure how it arrived but a new study on the use of HBOT to ameliorate some of the symptoms of autism arrived in our email inbox. I have read some previous papers on the use of HBOT in treatment for asd, however this uses a more robust experimental design

In reading it I found some things of interest as they relate to K:

• K’s C-reactive protein levels have been high in past lab work that we have had done.  If this is an indicator of inflammation this is supposed to be alleviated by HBOT.
• This protocol does not appear to increase oxidative stess which past lab results have also indicated in K.
• Does his seizure disorder (absence seizures) prevent him from having this sort of treatment if we were interested?

I have attached a copy of the study and it, along with other studies on HBOT (and other topics), can be found in our documents repository.  You have 2 options;  the fancy interface or something a little less flashy.

HBOT_Trial_for_ASD.pdf

What are other’s experiences with HBOT?  I know we have facilities in our area, but am not sure if others have used them and what their impressions/results were.  Comments?

Did anything really surprise or shock you in your research?

“Two things were shocking. We exposed ourselves to all kinds of daily products and measured our blood before, during and after that exposure. After doing those experiments, we found elevated levels of the chemicals in our blood. So, for example, I’ve been doing mercury research for about ten years but I’d never actually consciously sat down, eaten a bunch of tuna and measured my levels. I found that my mercury levels almost tripled in a few days, just by consuming several tuna meals consecutively.”

As anyone involved with autism in some capacity is painfully aware the discussion of mercury as an underlying causal agent in some ASD’s is heated and everpresent.  It is usually in regard to vaccinations, but the recent change in position of many of the most vocal autism groups (Green our vaccines campaign) has moved, to some extent, away from that line of causality.  Never the less, I find it incredibly interesting what the author found regarding his mercury exposure from eating tuna.  I also remember reading a review of a scientific paper that showedd a correlation (yes, I know what that means and does not mean) between autism rates and environmental mercury levels in Texas.

For me this just confirms that anyone that dismisses the idea that some ASD’s can be manifestations of environmental exposure to toxins is naive or has their “head in the sand”.  This book, which I might consider trying to read, sounds like it may provide some rudimentary, anecdotal data on how exposure to everyday items can have a profound impact on our internal environment. Now consider the impact for pregnant mothers and unborn babies as they develop.

Perhaps there is something to the “detox” aspect of alternative autism treatments.  At best it is helping and at worst it is unlikely to be doing any harm and is just making your bank account lighter.  I don’t think I would go so far as to support full chemical chelation as a good option for all ASD’s, but it is undoubtedly appropriate in some cases and should be considered as option for some.  Would we do this with K?  Not likely, not without some good compelling evidence from medical tests that it was warranted.

Anyone have any thoughts on the subject?  Please let us know what you think.

I was prepared for the usual bias due to receiving the information from the company and it’s paid researchers, but was pleasantly surprised by a comment from one of the physicians that was speaking. He strongly urged everyone in attendance to do their due diligence and not just take the company’s word for how good the product is. He even made reference to PubMed and its usefulness as a resource. I have used PubMed many times and many of the papers in our repository have come from there so it was reassuring to hear it referenced given the context of the presentation.

We are doing some further research on the supplement, but I think it is safe to say that we will be giving it a try with K. The research indicates that it will address some of K’s physiological challenges; oxidative stress (as indicated by various blood tests he’s had), improved immune function (there is no downside to this), and system detoxification (K takes 300mg of Tegretol daily- a drug that can be hard on the liver). We just need to confirm that it does not contain any casein, or at least an insignificant amount due to K being on the GFCF diet. Also, that their are no contra-indications with his anti-seizure medication.

I received some research on Immunocal and have put it in the documents section as well as linked to it below. I will also include some links to PubMed information I read previously on the product.

• Immunocal in the Compendium of Pharmaceutical Specialties
• A study on the use of Immunocal in autism
• Pubmed entries specifically for Immunocal
• Effect of Immunocal on glutathione levels in athletes
• There are over 84,000 entries in PubMed relating to glutathione!

I have found that though there have been lots of happenings going on I seem to have lost the urge/desire to write about them. Admittedly I am very interested (alright, borderline obsessed) in the workings of our website and in trying to get things set up just the way I envision them. It is unfortunate that a site that only partly works is next to useless and therefore there needs to be a fair amount of development work, especially for a novice like myself that just tries to muddle through by trial and error, before the site can be rolled out. I’m now hoping that all that is left is just some minor tweaking on this site and then I can start doing what it is supposed to be about- the content (hopefully I can stop obsessing about the techie stuff).

I want to start updating some aspects of our site and continue a couple of series that are the most popular on our site:

• K’s toe walking and that series of posts are far and away the most viewed on our site and I will be updating that series shortly.  It has also been the impetus for one of my next projects that I am just trying to get finished up and will be dedicated solely to this subject.  So stay tuned for more information on both the personal and the techie level.
• K’s seizure activity and our continuous efforts to keep them controlled and how we are managing so far. These posts are also quite popular and is also something I want to update for others that may be having the same experience or undertaking the same journey.
• Our work with a local advocacy group has motivated me start another project that will be a community based site with a lot of local information and content as well as a forum for the exchanging of ideas, information, as well as goods and services.  I am close to finishing it and just need to finish up some of the features, load some initial content, and hopefully local families and individuals will find it useful.
• A new series I want to start documenting is K’s journey from pre-school to kindergarten and what we as parents have been doing in the background to make that transition as smooth as possible and to ensure we are getting all K’s supports in place for the big move to the public school system.

So, look for more content and less techie tweaking to come ( I hope- as long as the site keeps working Ok).  Hopefully I can get the writing bug again as there is lots to talk about personally as well as in the Autism community at large. Check back soon for more…

So it was this past Thursday the kids and I were in the car heading off to school when I had the overwhelming sensation of having forgotten something. A quick inventory; 2 kids, lunches, backpacks, communication book it was all here and we were early too, something was just not right. It was not until lunch time when I received a call from Tracy that it came to me in a rush, I had forgotten to give K his anti-seizure medication! We had started documenting our experience with using Tegretol to control K’s absence seizures and how it was affecting him, his school, and his home life. Suffice it to say, after what transpired I don’t think we need to have any discussion about whether we continue to use the medication or not.

Miss M. and Miss C. from his pre-school are so incredibly tuned into K that when Tracy came to pick him up they asked if we had changed anything or if anything new was happening with his treatment. He not only did not appear to be himself but they witnessed 3 minor episodes in the short 3 hours that he attends. Since we got his dosage stabilized and have been giving it to him routinely, except for this minor transgression, he has not been having any seizure activity that we or his pre-school have noticed and in my opinion has really been having a developmental spurt.

I feel that since his dosage has stabilized that he has really been improving. He is much more interactive with us and his sister as well as more communicative. We are really beginning to see his personality come shining through and though I was never really sure that we were seeing a lot of seizures the medication has definitely been helping. The recent flourish in K has very likely been attributable to the medication, and I think I confirmed this with my unintentional, yet very informative, experiment.