Where and how should I start with HBOT?

December 9, 2009

Hi All,

I haven't had a chance to post much. My three year old daughter has cerebral

palsy due frontal lobe bleed in brain at birth. My wife's water also broke and

the OBGYN kept my daughter decided to keep my daughter in for another three days

before C-section. She was a preemie at 29weeks. She also has Lennox Gastaut

Syndrome (epilepsy) and our ever famous global developmental delays. For the

past year we have been dealing with increased seizures. In mid Nov, we started

the Ketogenic Diet and are fortunate not to have any visible seizures for a

little over three weeks. We are trying to maintain " seizure free " and hopefully

decrease meds that were never helping. Our other concern is her development.

The seizures and meds have caused her development to regress this year. She is

developmentally four to six months of age.

What do you recommend is the first step to attempting to have insurance to pay

for HBOT. We have Aetna PPO and Medi-Cal. I don't beleive her pediatric

neurologist will provide us a prescription for HBOT since they don't recommend

it. I will pester him again next week at our follow appointment though. There

is a local HBOT center close to us. The owner has referred us to a doctor who

can provide us a prescription for HBOT. But will a prescription from someone

who is not a neurologist actually help get insurance to approve? I have also

been told by others to get a Spect Scan as well? We are not in a position to

pay for HBOT and spect scans out of pocket with the hope that insurance may one

day reimburse us for any costs incurred.

I have signed up for NBIRR.org and talked to a facility two to three hours away

who will contact me if clinical trials get approved but would definitely prefer

the HBOT center closer.

I appreciate any advice. Since we started the ketogenic diet, I have seen my

daughter smile and laugh more in the last three weeks than I have in her

previous 33 months. I just want to give her a chance to do things others kids

are doing.

Thanks!

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