Sunday, February 15, 2009

Hyperbaric oxygen treatment for children with cerebral palsy

I read a writeup about a study on hyperbaric oxygen treatment (HBOT) and its effect on gross motor skills at a blog I recently discovered, Therapies for Cerebral Palsy. Thanks, Andy, for bringing it to my attention. I googled around and found the study itself, in The Indian Journal of Occupational Therapy, because I wanted to read more about it. The study was originally reported in the Journal's April - July 2003 issue.

When Max was an infant and we were panicky about his future and desperate to try anything, we did HBOT for about half a year, starting when he was nine months old. We did a total of 40 sessions. The idea behind HBOT is, basically, that there may be areas of the brain surrounding the damaged areas that are dormant—and they have the possibility to be "woken up" and sparked into activity.

The kids in the India study were ages 2 to 5, and there were 30 of them divided into two groups of 15. One group got one hour of occupational therapy for six days a week for a period of six months. The other group, in addition to the OT, got HBOT for one hour a day for six days a week. At the end of the study, the kids who'd gotten HBOT had more improved gross-motor abilities than the group who did not get the oxygen therapy.

The study authors note that this is a very small study, and a larger study would be needed to make more concrete conclusions.

The benefits of HBOT on kids with cp are not clear-cut. I remember it being incredibly expensive (I've blocked out just how much so, but think around $150 a session, no insurance coverage, though prices vary and it's cheaper if you get one of those home oxygen tents). The treatment involved lying down with Max in this type of long glass tube that is not for anyone with claustrophobia (here's a photo of how the tube looks). Then the technician would infuse the tube with pure oxygen. We'd watch Baby Einstein videos to pass the time (but as I mentioned in another post, it's been proven that the videos are not necessarily good for kids).

I have no idea whether or not HBOT had any effect on Max. It's true that Max is doing so much better than the doctors at the NICU said he would—he walks really well, he can speak some words, he's bright. But, he's also had a lot of therapy, starting when he was one month old. And he's got determination (I like to think he inherited my stubborn streak).

Dave and I have always subscribed to the "If it can't hurt and might help, we'll try it" theory of therapy, so we bit the bullet and got it. And I would do it all over again.

What are your thoughts on oxygen therapy?

20 comments:

  1. My daughter,Kylie, has CP and we too do the if it won't hurt and might help then we will try it theory. We started therapy right out of the NICU and continue with the therapy today and she is now 7 years old. When she was 4 she went to Canada and then to Pennsylvania for HBOT and conductive education. We were very pleased with her progress she made with the intense therapy. As for her speach improvement we give HBOT the credit for this. We also think the HBOT caused her hair to go from straight to curls to her scalp. No medical proof that the HBOT caused the hair change but when she left for Canada it was straight and when she got back I did not know what to do with this new hair. Back to the speach. We were very impressed that her speach had improved so much and that her vocabulary had increased. We have been considering doing the CE and HBOT angain. Money is the only thing holding us back. If we went we would go back to Canada. We saw the most improvement there. Just a side note. At both centers the chambers are ones you can sit up in and hold your child. One of the chambers held four people and the other held about eight. Not the long skinny tube you have to lay flat in. I don't think I could handle that one. You are a strong woman. So I guess to answer your question. Yes, I do think HBOT is a good idea for children with CP or any other type of brain injury.

    Vera Spinks
    bvakspinks@yahoo.com
    Tuscaloosa, AL

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  2. I agree with you wholeheartedly - if it won't hurt and could help, we should give it a try! I've always wanted to at least try HBOT with Daniel. However, my husband is very wary of it. He's convinced that it will cause Daniel to have a seizure. Daniel doesn't have epilepsy (knock on wood!) and he has never had a known seizure; the EEG that he had about 10 months ago came back clear, which was a honestly a huge surprise to us considering he had a stroke. So, Hubby doesn't want to jinx it, so to speak. After the botched Botox injections, I think he has an even stronger case against me. Still, I don't think it would hurt and I really would like to give it a try.
    On a side note, do you have any experience with e - stim? Daniel is due to start it at his PT appointment next week, and I'm wondering what the results have been for other kids. Funny, Hubby is OK with having our son electrocuted and poisoned, but refuses a little extra oxygen! Haha. I know that Botox is relatively safe and the e - stim doesn't hurt, but it's still a pretty funny concept.

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  3. I agree with you completely. Anything that MIGHT help Emmett but definitely won't hurt, we'll try.
    Emmett issues are different from Max's and HBOT had never been offered to us, but now you've got me curious! Maybe this is a possibility for him.

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  4. Ellen, I don't know if you saw this link in your perambulations around the internet researching HBOT, but it provides information on an additional study, same subject. It seems to me, not that I'm a scientist, that the benefits are pretty doggone clear cut. I sure wish I could afford it.

    Daily living, socialization, communication, and motor skills significantly improved for 21 children treated with hyperbaric oxygen therapy (HBOT), compared with 21 brain-injured patients who received standard therapy. Researchers included a third group of 21 healthy children to control for normal growth and development, reported Dr. Charles J. Golden at the symposium sponsored by the Ocean Hyperbaric Neurologic Center.

    Participants were assessed more than 1 year after onset of their brain injury. The majority had cerebral palsy. The average age was 4.5 years (range, 12 months to 18 years), said Dr. Golden, professor of psychology and director, Neuropsychology Assessment Center, Nova Southeastern University, Fort Lauderdale, Fla.

    Average functioning level was close to two standard deviations below average—“so this was a very low functioning group,” he added.

    Mild changes in some areas but no changes in the cerebellum were noted after 35 HBOT sessions, compared with baseline, Dr. Golden said. “This is not unexpected. These children had injuries high up in the brain.”

    “Interestingly, you can predict reasonably well who will be a responder based on response over the first 35 treatments,” he said. “Some people are just nonresponders—you can give them 200 treatments, and they will not respond. Others are marvelous responders who respond well and right away.”

    After a second round of 35 HBOT treatments, “there was a much greater effect on blood flow—so it seems to be a time-based effect,” Dr. Golden said.

    The HBOT group made major changes in all areas that were greater than either the normal or standard therapy control groups...."Improvements in motor functions [from HBOT] allowed them to do things they could not do at the beginning of the study."


    It's from the second sublink at this website: http://www.drcranton.com/hbo.htm

    Like I said, if I had the money, I'd go for it. It sure can't hurt.

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  5. Hi, Vera. Canada has a lot of progressive therapies like this, I've heard, you are lucky that you got to go. AND sit up instead of lying in a tube!

    Johanna, that botched Botox incident was such a fluke. I haven't heard of any other parents having trouble—I know you're probably gun-shy to do it again, but you should keep it in mind, with a different doctor. I can understand your husband's concerns about HBOT, but I am not sure whether seizures are a possibility. Does your neuro have an opinion on that?

    Thanks for the additional study, Felicia. All of these studies seem to have been done on a really small test group. That Dr. Cranton is a big proponent of HBOT, I've sen his site. I wish someone would do a major study!

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  6. Hi Ellen,

    One of the most recently published articles I've found regarding HBOT and CP is from The Journal of American Physicians and Surgeons in Volume 12 Number 4 - Winter 2007 titled "Hyperbaric Oxygenation Therapy in the Treatment of Cerebral Palsy: A Review and Comparison to Currently Accepted Therapies"

    I really appreciated the conclusion of the article, which goes right along with the "if it can't hurt and might help, we'll try it" theory of therapy.

    Regarding seizures, I've read that pressures over 2.0 ATA can possibly induce seizures. My son has completed 40 sessions at 1.5 ATA and we're getting ready for another 40 sessions in a couple of weeks, coupled with intensive PT, OT and Speech.

    There is a larger ongoing study in progress to evaluate the longer-term effects of HBOT on children between the ages of 3 and 8 years of age with CP - "An Evaluation of Hyperbaric Treatments for Children With Cerebral Palsy". Hopefully this study will help to provide additional insight into the effectiveness of HBOT for kids with CP.

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  7. Thanks Ellen, for bringing up such an important topic. Andy is my hubby, so it's probably pretty obvious where I stand on the topic of HBOT. The risks are few, so go for it! I totally agree with the if it won't hurt and might help philosophy.

    HBOT is not a miracle cure, but I really do believe that it helps heal brain injury. We're heading back for our second set of 40 treatments, so we obviously feel that it helped our little guy.

    I think it's important to note what Elijah was doing before HBOT. He was 12 months old and could sit unassisted, could maintain four point for a short amount of time, smiled, and laughed. I don't, however, think it's a coincidence that during his 40 treatments, he started disliking getting his diaper changed and hated getting in his car seat (things he could have cared less about before!). I don't think it's a coincidence that he picked something up and looked at it for the first time ever.

    I also don't think that he would have crawled or walked as soon as he did. He started walking -without assistance!- at 17 months. We give the credit to God first and second to HBOT. Is he "cured" of his injury? No, but we have more of him. And I wouldn't trade that for anything.

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  8. i totally want to do HBOT. but don't know how to make it work with working full time.

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  9. Ellen, here's a video of how dramatic the results can be, and this is with an adult, less plastic brain. I just don't understand why the insurance won't cover this--this video starts out a bit hard to watch (the poor subject, Curt, suffered traumatic brain injury) but the improvement you see is nothing short of a miracle. I think this is the ticket for any brain insult (to say nothing of other conditions, like wounds failing to heal for example) and it's certainly less intrusive than cutting people open, and in the long run it's probably cheaper to increase function and consequently, reduce "services" that have to be provided because of low function:

    http://www.youtube.com/watch?v=nbFs9NN__Mk&feature=related

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  10. Sorry I can't comment on the HBOT... It's a face that brain cells don't grow back after they die... BUT the brain (particularly children) CAN rewire it self... HBOT may help that. But I also question while on HBOT, did you do any "extra" therapies and "stepped up" any PT that may have influenced the results?

    I'll also had our friend Cole had PERCS surgery preformed a few months ago by Dr. Roy Nuzzo, and is doing very well after. I high suggest you look into this surgery for spastic legs before any other. - Nothing short of amazing...

    http://tinyurl.com/d9ppdn

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  11. Felicia, thanks for that video, too, it was interesting to see. I believe, although I am no expert, that there is more proof of HBOT's efficacy with brain-injured adults, specifically adults who have sustained brain damage doing deep-sea diving. Still, there are so many unknown variables with brain injury; it is possible, even in adults, for brains to heal, and it might just be that's what helped Curt, the guy in the video (assuming that the video is not in any way a fake). He could have gotten intense therapy, too. Or it could have been the holy trinity of natural healing, therapy and HBOT. I think there are a lot of quacks out there doing HBOT looking to prey on parents like us who are desperate for our kids to get better. HBOT could very well work, but I still feel it is not a proven thing at this point though I was willing to try it because it seemed like something worth trying. I look forward to hearing the results of the study Andy mentioned above!

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  12. My parents chose to do a therapy with me that involved Carbon Dioxide which supposedly increases the absorption of oxygen. I'm not really sure about how it works. I tried to look it up just now, but couldn't find much. I did an intensive program for about 3 years and that was part of the program. My parents were happy with the results. Now, there is a lot of talk about Stem Cell therapy as well, but I don't know much about that.
    ~Marianne

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  13. I am a parent considering it and I am a therapist who saw it work. I am a pediatric SLP. I worked with a little boy around the age of 2 who had a brain injury that he received at a few months old. He was making little progress with his speech. His parents started HBOT and he came back using phrases. I have worked with speech delayed children for over 7 years and I have never seen a child make such rapid progress. I discharged him from therapy a few months later.
    Over the past few months we have noticed asymmetrical movements with my infant son. He has received PT since he was 3 months old. When my son started to have difficulties I thought of HBOT. We are going for an MRI tomorrow and then go to see a Neurologist the following Monday. Based on the results, we will start to consider all the options that are out there. I know that this will cause many of my colleagues to look at me a little strange. They laugh at some of the nontraditional therapy methods.
    I often use the saying "can't hurt, might help" when I talk with families. Therapy is a game of trial and error. There is not a cookbook answer to the best treatment. Never second guess your decisions for Max’s treatment.
    Melissa

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  14. You're right, the Botox incident was definitely a fluke. What happened was that the doctor injected Daniel's quads, which are already weak, instead of his heel cord, which is tight. I'm still kicking myself for allowing it to happen. Part of me wants to give it a try with another doctor, but part of me is too scared. It's a bit of a shame, since I've heard such great things about it from you and other families! I really think that Daniel would do well with a more capable doctor. But since the PT is very against it right now, I think we'll hold off for at least a little bit. But hey, perhaps now Hubby will consider HBOT if I agree to not bug him about Botox for awhile...

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  15. Oh, and we were told that seizures would only be a concern if Daniel had severe epilepsy AND he went in under poor conditions (with a fever, on a very empty tummy, etc.) I really think he will be fine, and I'm going to try having Daniel's neuro talk to my husband to see if we can calm his fears.

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  16. Honestly it was one of the maaaaaaaany things we considered trying with Regan....and nixed. she is 13 now, and the research just didn't show (at the time) significant changes. I had a friend who claims it helped her child with some speech issues....but Regan never had speech issues. We went the Botox/SDR route (I know it is in my archives somewhere) and we have never been happier with a medical decision. I know that is sratic for some people......but it worked beautifully.

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  17. HBOT is an idea that floated through my head at one time, but it was quickly flushed from my brain. I had done a lot of research on it at one point in time. From what I found, the benefits from treatments were inconclusive.

    Even so, I was willing to give it a shot for Logan. We were just never able to afford treatment. Had we been able to, I probably would have given it a shot. Just to see if it would have made a difference.

    Knowing what I know now, I guess I'm glad it never worked out. We were fortunate enough to have been a part of Conductive Education. Now that there delivered results. I'd love to elaborate if you want me to.

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  18. Oh, a subject I have gone back and forth with. I've seen indications that sometimes there's a magic number that if you go over for your specific child, it can cause the reverse - or you can go backwards. No one knows what that magic number is and that's frightening. Otherwise, I wish I could do this for Alex. It just seems to promising.

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  19. HBOT is one that I spent a lot of time considering. I nixed it for a couple of reasons: one, a lot of parents reported some skills regression after they stopped the HBOT and needed to go back for more. Two, there is a small chance that HBOT can damage the ear drum. Since Charlie is so reliant on his ears i felt it wasn't worth the risk. Also, money doesn't come in an endless supply and other therapies trumped HBOT. If I had endless funds then I might have gone for it. I just went with the alternative that was best for us.

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  20. When my son was 2 we took him to PA for a month and did Hyperbaric Oxygen Therapy in conjunction with Conductive Education. While I would not recommend the place we went to I would like to take him for HBOT again as the results were awesome! Before the 40 "dives" were complete he said his very first sentence... it was "Hi Deer!" (There were a lot of deer by the condo we rented.) Within the month following treatment he also started to crawl (GI Joe style) for the first time!

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Thanks for sharing!



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