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Reflections on HBOT…after First 10 ‘Dives’ December 8, 2008

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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Tonight, we are scheduled to resume the next set of 10 HBOT dives. The first 10 were squeezed in between Election Day and the Monday before Thanksgiving. The next 10 should be done before New Year’s Eve.

We took 2 weeks off to regroup and battle an intestinal yeast overgrowth… which I undertand is a common side effect of Hyperbaric OxygenTherapy. We slayed this dragon using activated charcoal in the evening, and continued our strict adherence to the specific carbohydrate diet, and made sure we never missed a probiotic dose.

No one warned us about this side effect, but I had read about it somewhere a long time ago and it was floating around in the back of my mind. So I recognized the signs when they came screaming at me! Not that that made it any easier to deal with, mind you.

An ABA therapist who knows my son well commented yesterday that the few people she knew who used a soft HBOT chamber had bad behaviors from it and stopped the treatment. The parent of the one child she knew who had used a hard HBOT chamber (which is the type ‘C’ is using) said her son is talking up a storm now. That got me thinking…

I certainly hope that those other parents didn’t give up on the therapy, thinking it was causing a permanent behavioral regression…when it may simply have been an undiagnosed yeast overgrowth…which is somewhat easily correctable. We’ve battle yeast with powerful prescription meds like Lamisil and Flagyl, and this time we went holistic with the charcoal.

So I’m posting this to remind people that if you or someone you know is doing HBOT, please consider preventative measures to ward off yeast overgrowth…or at least investigate whether any undesirable behaviors that seem to be caused by the HBOT may actually be from yeast instead.

So, to summarize the experience of the first ten dives, I’d say that there was a definate down side of very bad, regressive behaviors which we hadn’t seen in almost 3 years…coincidentally the last time he had a yeast issue. Lots of lining up and stimmy behavior, short-tempered, biting himself when angered, minor sleep disturbances, more tantrums at school when demands were placed or transitions expected.

It was really upsetting to see this and we initially felt like we made a big mistake doing the HBOT. When you are in the middle of a downward spiral like that, its hard to have faith that its going to level off and be okay.

But…as fast as the regression came on…it left. For two weeks that felt like a month, he was often Mr. Hyde. Then, suddenly he was Dr. Jeckyll again. To stay. Well, not really, but you know what I mean…

The positives far outweighed the negatives. The bad behavior is gone and in its wake we’ve been left with a more connected, attentive angel boy. The eye contact is much better, the choices he makes at school are consistently much better. Very little tantruming or need for redirection at school. His play is more creative and appropriate. 

The most noticeable benefit is that the average length of his utterances has increased from about 2 words to about 7 words. (“Open window” is now “Can you open the window please, Mom?”) And he is speaking all the time now…at least in the home setting. He is starting to read. He is also spelling words out loud for the heck of it…like in the tub, spelling M-U-S-I-C and L-I-T-T-L-E, which are words too advanced for his level in school. He finally spontaneously told each one of us that he loved us, on separate occasions.

And its too early to get to excited, but he didn’t watch Noggin for one minute this weekend…the whole weekend. He started playing Wii sports!

I swear… if he asks to watch CNN instead of Dora tonight while we’re laying trapped in the big glass HBOT tube…I am going to go berzerk!

So, I am trying to be cautiously optimistic as we continue with the HBOT. I hope we won’t suffer through another bad regression with the yeast flaring up again. I hope the gains we’ve seen so far will be permanent and that he will continue to improve. I wish I knew someone else who went through this and could tell me I was doing the right thing…

At least it’s the season of miracles.

I’ll keep you all informed as we go forward on this exciting journey. Please pray for ‘C’.

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Comments»

1. Angie Bender - December 17, 2008

OMG@!!!! I’m reading this and literally shaking as I type this message. My 3 yr old son Brice is on his 6th dive. Two weeks ago we started a gf diet along w/Biomed treatment. We have been cf for more than 2 months now w/good results. I was just stubborn and really afraid of going gf. It’s been a hard 2 weeks but I’ve found a couple of items that he will eat. Anyway, I noticed an increase in Brice’s stimming w/in 2-3 days of the hbot. Than since visiting the Naturopath doctor I learned that we need to clean Brice’s gut to get everything working properly. Well the past 3 days have been REALLY nutty. His BMs are the worst. Not saying that BMs are suppose to be good but his are REALLY smelly and like bread dough w/mucus in it. So I called the Dr. and he said this is to be expected w/all the biomed stuff he is taking. So of course, I immediately jump on the net to learn more and I found your post. I had NO IDEA that HBOT could cause on overgrowth of yeast. I’m no expert but it seems to make perfect sense to me. I will contact the doctor on tomorrow to see if we need to give the HBOT a break until this yeast issue is under control. The little guy is dealing w/it, it’s me going nuts. Thanks so much for this informative post.

2. hope4mygirl - December 18, 2008

WOW!!!! SEVEN WORD SENTENCES!!!!! ABSOLUTELY AMAZING!!!! My daughter has a severe allergy to yeast (of course, we didnt know about it til NOW!!!!!), which will hopefully be treated SOON…..CONGRATS on “C”s newest accomplishments!!!!! SO WONDERFUL to hear!!!!!!!!!

3. hopeauthority - December 18, 2008

Hey Angie! Welcome to yeast die-off hell. Seriously, I am no doctor, but I have read (and been told by my own) that HBOT can cause a yeast flare up in some kids with that history. But just as likely… if not more likely… (again I’m not a doctor so speak with yours) it could very well be that your son has a yeast die off from recently going gluten free. So you could have a double whammy going on. Ask your doc if epsom salt baths may be helpful for your son while he’s going through the die-off (they seemed to help mine). My son has used meds and holistic methods to help clear up stubborn yeast in the past. I prefer holistic whenever possible, but that’s just a personal choice each person must make themself. Good luck and check back and let me know how your boy’s doing!

Hey Hope4mygirl! Your girl is gonna be fine because I will be right on you every step of the way..you can’t get away!

4. Angie - January 10, 2009

Hello Again, it seems this yeast die off deal just won’t end. Our Naturopath DAN! Doctor says that Brice has little to no healthy bacteria in his gut (after receiving the poop test results) and still quite a bit of bad yeast. I suppose I can thank HBOT for that. Our new line of defense is Flora Restore, Grape Seed Extract, and Caprylic (sp?) acid. At this point I wouldn’t be surprised if his head spins around and he spits out green pea soup from this yeast nightmare. We are approaching our 20th dive next week. I’m thinking a break is in order partly due to finances and the fact I have to drive so far to get to the darn clinic for the treatments. And oh yeah, paying for the Naturopath doctor is pulling me under faster than an anchor. A 10 min. conversation netted him a hefty $90. Is normal? I have no point of reference to ensure I’m not getting screwed. I actually like the guy but geez I’m going to have to win the lottery real soon or my little guy will only receive services in the schools (which ain’t much). Thanks for post and great info! Good Luck.

hopeauthority - January 11, 2009

Angie: I just sent you an email reply.

5. Maria Sakellis - July 15, 2014

Hello all- just reading this a few years after your posts and wondering how HBOT went for you in the long term? We begin a set of 40 dives this week with our asd 6 year old.

hopeauthority - October 3, 2014

Maria: My apologies. Long sick mother-in-law story that I won’t bore you with. I should ask you how it went with your son’s 40 dives by now. I hope well. My son did that first set you referred to when he was about 4 and the language gains remained. He had no relapse regarding any benefits. I had the opportunity to do another round of 20 dives last summer (2013) and saw more gains, most notably in calmness/cooperation/reduced anxiety and more focus. I highly recommend HBOT, but of course it is expensive.

6. Hopehelp - June 21, 2015

Hello.

I hv a 5 year old ASD son and I am thinking about HBOT for him. Based on your overall experience could you please let me know what benefits you got through HBOT. Please feel free to contact me on my email_id if needed.

Really appreciate your input. Thank you

hopeauthority - December 18, 2015

So sorry I missed this post. I hope you did HBOT and saw benefits from it. Please see my comments from today to Helen on another post… and to answer your question I’d say the biggest benefit I saw when my son did HBOT was in language development. He did not lose any gains he made. He was young when he first did HBOT, like your son is, and that was huge growth. When he went back years later, the gains were not as noticeable as when he first did it, but still saw them. Mostly better attention and focus. If you did it, what benefits did you see? Tracey

7. Helen - December 18, 2015

Hello,

I know this is a post from several years ago, but I’m wondering how your son is doing now? I’m in the UK, where not a lot is know about HBOT use with Autism it seems, but finding a centre to go to is fairly easy and inexpensive. My ASD daughter (aged 6) started HBOT a few weeks ago, after a year or so on a paleo-like diet, and we’ve seen MAJOR MAJOR regression, despite the fact that her language is better in her calm moments (which are now few and far between unfortunately).

Please tell me that the regression does lift eventually! It’s now been nearly 2 weeks of regression, but honestly it feels more like 2 years, as it’s hell on earth.

Thank you!

hopeauthority - December 18, 2015

Hi Helen:

Great job doing the Paleo-type diet. My son does Specific Carbohydrate diet which is almost identical to paleo. I’d suggest using honey instead of maple syrup in all recipes though. I’ve never heard of anyone who did not benefit from HBOT and its great that you can access and afford it.
What I can offer by way of hope is my own experience that whenever my son would be making big gains in one ares, he would ALWAYS have major regression in another. I think of it as the brain putting all this energy into the positive gains like language-making and that at the same time, something else has to give like the behavior side of things, usually. And then things level out, leaving just the gains.
That said, I’m not a doctor so I’d definitely tell the doctor supervising her what’s going on just to rule out anything medical. Maybe the ear pressure is bothering her? Maybe an adjustment needs to be made in the number of dives per week or the pressure?
I hope it levels out soon. Keep doing the great job you’re doing, especially when it’s hard, and especially when most others are not doing it, or are taking the easy road. Paleo eating with the right supplements, and the pure oxygen of HBOT are things I feel good about putting into my son. Good luck! Tracey

hopeauthority - December 18, 2015

Oh…and my son is now 13 and doing very well. His language is there, but his communication skills are coming along slowly as far as holding an extended conversation goes. He is very active in extracurricular activities after school, including a special needs acting class, piano lessons, 4 dance classes (3 special needs and one typical), special needs baseball and lacrosse. He is in his school’s musical show/play and is on the track team. All things I didn’t dare expect in those hard, early years. So have hope! all the things you’re doing are helping and just growing up and maturing helps too.


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