As mentioned numerous times in previous posts, we are looking into Hyperbaric Oxygen Therapy (HBOT) for Aidan as a supplement to all his other regular treatments. We have seen multiple positive reports on how HBOT has a positive impact with the treatment of damaged brain tissue. We checked with the doctor here at Carolinas Medical Center and gave an absolute thumbs down to the idea of performing HBOT on Aidan. We started looking into other locations (e.g., Miracle Mountain) for treatment after Aidan goes home.
A friend of Erin's connected us to a lady in Charlotte that does HBOT for children with autism. Her friend felt we would be perfect candidates. After calling the lady, she was all for it and even offered the first week of treatments (2 sessions per day for 5 days) for free! She suggested we call Dr. Corbier to get the prescription written, which we did and he did almost immediately.
We thought we were well on our way ... then we talked to our physiatrists. Neither were for the treatment. We spoke with Dr. Colleen (this is her first name ... her last name is German and a little tricky to pronounce) when we were looking into the treatment and looking for someplace to get it done. She wasn't fond of the idea. Dr. Nelson "rolled her eyes and scoffed" at Erin. Dr. Colleen quoted a single instance where a patient died due to aspiration when the child was fed before therapy. In our honest opinion, one death does not a "bad report" make.
We wanted to start HBOT while Aidan was here at Levine, but there may be a kebash put on that. According to Dr. Nelson, Medicaid will likely not approve transporting Aidan to and from HBOT 2x/day. She said it was "up to Social Services". She also feels that if we transport him even 1x/day for HBOT, then why should we have him here in the hospital?
Here is my take: HBOT has been done for years! The Undersea and Hyperbaric Medical Society (UHMS) has thirteen accepted indications for HBOT. Only one involves the brain directly, even though studies have been performed that shows it is effective in brain injury, cerebral palsy, and stroke patients. It's OXYGEN, people!
Needless to say, we have already contacted the lady who offered the HBOT and I asked her to be in contact with all parties involved. We'll also be in contact with Dr. Corbier. Hopefully, we can take him while he is here. If not, he'll be going the day we leave the hospital.
4 comments:
It's sad to say but you will find the majority of main stream Dr.'s will not think that HBOT treatments are a good idea.
We have found that it has done amazing things for Luke. Luke went home with a trache, in a almost comatose attitude and on 6 prescription medications. We started HBOT one month after we were out of the Hospital and within 7 month's Luke had his trache removed, he is smiling, crying, laughing and is currently only on iron, I would say that is a big improvement. Though some would say they don't see enough of it to justify the money spent, oh well Luke is our child not theirs. I say that HBOT treatments have done wonders for Luke and so has his PT. She says that she can tell the difference of when we are taking Luke for treatments compared to when we have to stop because of lack of funds. HBOT treatments have also been proven to help with seizures, which Luke thankfully has not suffered with, but I know Aidan has been.
Enough said for now. I would say finish up with what Aidan is doing in rehab and then get him into the Hyperbaric chamber the day you leave. What a huge blessing to be offered free treatments.
Love in Christ,
Sue Searles
PS Did I say that Aidan is looking great in his pictures today??
http://www.skipofny.org/
Maybe they can help you, I believe they have this in NC too
There was a story in the Dallas area of a little boy who was autistic who died from HBOT when it caused seizures that complicated a head injury. HBOT is known to trigger seizures in autistic and brain injury patients with any kind of seizure activity - so maybe your doctor is concerned that it will make his storms worse? In fact, the hospitals in Lubbock will not allow a child with autonomic storms to go into HBOT unless they have been off all seizure and storm medication for 15 days. Some doctors are really scared of "alternative" medicine and aren't willing to put their medical practice at risk for something that hasn't been given the green light by the government - after all, it's the government who will take away their license if something goes wrong... sad, but true. Good luck - I hope you find out something soon - I know it has helped a lot of the autistic kids here in Tulsa
Like so many on the cat forum where your friend has been posting your emails, I've been wrapping Aidan in love and hope and healing light almost from day one, and that will continue as long as it takes. Thank you for your faithful updates, and for being such wonderful parents. Our hearts are with your family.
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