Hyperbaric treatment for PANDAS?

[LindaMW]

Someone just recently mentioned to me they had hyberbaric oxygen treatment due to numerous surgies and the risk of infection. She was just wondering if that would work for our Pandas kids? I did some searches and found it is used in treatment for autism (some cases) but I wonder would it help Pandas too?

 

I have also been referred to a developmental pedi for my sons Pandas treatment and she really seems to understand this better than anyone else I have dealt with. I know she mainly deals with autism but she said she has seen about 6-7 kids with Pandas. The treatment has been antibiotics to tonsillectomies. We have only seen her once but I hope she can help us before school starts and follow through from there.

 

This journey has not been pleasant and I have learned so much about the medical world, good and bad. I want to thank all you parents on this board again for all the help and advise I have read through this battle. Anytime I find something that may be usful I will post it here. I know there have been many posts that I have gained valuable knowledge from. Thank you to everyone again.

 

Linda

[BoyIowa]

We have a doctor suggest that we see another doctor that uses this therapy (autistic doctor). The doctor was several hours away and out of network. I also believe that the treatment was around $1500 each time. I have a family member that needed a chamber for a surgery mishap - septic shock. She had to go daily and it worked great for her. We don't have the $ for this or the IVIG that our insurance denied. I am sure our insurance would deny this too. I would also live to know if anyone tried for a PANS child.

[Jonos mom]

Hi,

We seen a natural path doc in Fairfax, VA that says that she would like to possible see me son get it. She wanted to pump his immune system with Myers Cocktails first, with a glutithione booster and get his diet right. We havent gotten to it yet. We see her in a few weeks and I will probably bring it up. I am afraid to since she doesnt take insurance.

[PowPow]

I know very little about hyperbaric oxygen from an integrative medicine standpoint- but I wanted to mention that there is a place in Tampa or St Petersburg FL that does this for brain-injured and (i believe) autistic kids.

When we were at CBT at USF and staying at the RMH , there was info about it- as some familes come to FL for the hyperbaric oxygen and stay the RMH.

 

I do not know if you are aware of this facility-- i think this is it:

HBOT facility

 

 

Also- Jonos Mom-- I am in your area and my child has seen a great integrative physician (of course, no insurance either)maybe it is the same one? Dr Z?

[Jonos mom]

I know very little about hyperbaric oxygen from an integrative medicine standpoint- but I wanted to mention that there is a place in Tampa or St Petersburg FL that does this for brain-injured and (i believe) autistic kids.

When we were at CBT at USF and staying at the RMH , there was info about it- as some familes come to FL for the hyperbaric oxygen and stay the RMH.

 

I do not know if you are aware of this facility-- i think this is it:

HBOT facility

 

 

Also- Jonos Mom-- I am in your area and my child has seen a great integrative physician (of course, no insurance either)maybe it is the same one? Dr Z?

 

 

We got to Dr Asher at Natural Horizons Wellness Center. If we all see her at the same time, the three of us are about $550 every 6 weeks! Not including the costs of his Iv pushes. IT is crazy. Still a lot cheaper for the recommended $20k IVIG treatments another doc recommended. I need to still submit for insurance and see if they will cover something, but I dont anticipate much. But something is better than nothing I suppose. I would like to hear more about your doc if you dont mind. Dr. Asher is crazy busy a lot of the time. All though I love her an what she has done so far has been the most beneficial for my son(14). She deals with a LOT of cancer patients and she is often stressed and seems a bit grouchy, and put things in a manner that are somewhat rude. It is sometimes hard to stomach writing a check out for that much money only to feel worse after leaving. I think I understand why she does it. She deals with very very sick people and if you dont follow her protocol to a T then she gets a little upset. Which with all the sick patients, I am sure she sees life as a gift (which it is) and we should not take it for granite. Then I bring my son in and he wont follow protocol sometimes and I am sure gets tired of "messing" with him. Does that make sense? lol

[PowPow]

PM'd you!

[smartyjones]

i don't really know much other than a precursory look a couple of years ago when i heard of a new center that opened in my area. i know it can be very good for certain issues -- i believe i had a diabetic aunt who used it with leg issues. i think people were having good success with lyme treatment. i seem to have a vague recollection that it may not be so good for certain infections -- the oxygen helps the infection thrive rather than helping get rid of it and i am not sure that strep may be one of them. that's all extremely vague memories on my part but i just mention it to be something to check out if your child may still have strep or have occult strep.

 

 

if you go ahead with it, please report results. good luck.

[twoplusone]

I have heard more bad things when kids use HBOT that have PANDAS (plus autism) than good. That being said, everyone has their own experience and some see great gains from it.

[4Nikki]

I wanted to bump this thread. Enough time has passed where someone could share successes or failures using this treatment. I am specifically interested in managing pandas systems. We get a number of warnings over the years, that turn out to be misdiagnoses. Over the years, One of the most common reoccurring markers is inflammation. But inflammation never shows up on tests except for a kidney stone. I.e. I think her immune system is jacked up with an inflammation response rather than responding to a specific illness or injury. We know that her mitochondrial cells are deficient and she has had the most improvements using supplements that support it. I understand a little about how the HC works having studied the effects atmosphere pressure has on gas in the body and decompression sickness. But I don’t understand how it could affect inflammation and the macrophage response if exposed HC pressure. Maybe it can help with binding clearing the excess antibodies and proteins? How do we get over the panic symptoms of being  claustrophobic? If you enter the chamber with two atmospheres of pressure and have a panic attack, you can’t just get out. Also I’m not inclined to pay the high price of treatment when I could purchase one for the price of one complete treatment. I would find some way to co-opt the cost.