Our first-ever HBOT dive

Every time before we start a new therapy or see a new doctor, I have trouble sleeping. I sit up, worrying about what could happen or what could go wrong. The fear of the unknown always comes out to play. This was very much the case last night. Today, we are starting our second round of hyperbaric oxygen therapy (HBOT). I know, we already did one round – 40 dives – of this treatment last Spring (see related posts here), I should be a pro at this, right? The answer should be yes, however this go around, we are trying a different chamber at a local family clinic. So, new procedures, new doctors, new place, new chamber…..it was nerve-wracking in the hours leading up to our appointment, but we’ve now gotten the first dive of our second round of 40 dives under our belt.

When parents learn about the potential healing benefits of hyperbaric oxygen therapy (HBOT), there are so many questions and uncertainties that arise before starting this treatment. Because it is an alternative treatment, there isn’t a ton of (U.S.-based) research to support it, and most doctors will try and dissuade patients from doing it.

Given this general lack of support and information for HBOT, I thought I’d post some of the questions I’m often asked most by other parents. It’s my hope that these will help provide answers for other parents researching HBOT as a possible therapy for their own child:

1. Does insurance cover HBOT?
   In most cases, no. In our case, the clinic where we did our first round of treatments, the clinic technician submitted documentation to our insurance company, United Healthcare, which covered our dives as out-of-network. The cost of HBOT can range widely, but I’ve typically found that most centers are in the are of $100 – $300 per dive.
2. Was your doctor supportive?
   Not really. Most doctors will not support HBOT because of the lack of U.S.-based research. It’s also not FDA-approved. We spoke with our neurologist before we started HBOT and she said that she couldn’t support it for the aforementioned reasons BUT she also didn’t see any reason why we couldn’t try it.
3. Who wrote the prescription for HBOT?
   If a center provides HBOT in a hard chamber, they’ll require a prescription. Some centers will have a staff doctor that can examine your child to confirm there are no contraindications (basically, they’ll make sure your kiddo’s lungs are a-ok) and they can write the prescription. For our first round of HBOT, we asked the clinic for a reference since none of our doctors didn’t really support it.
4. Did you get into the chamber with your son?
   Yep! Every single time.
5. Did you feel any effects from the HBOT?
   Not any huge effects. It made me pretty tired, though I am sleep-deprived since Bea still isn’t sleeping through the night. I will say, though, about halfway through, I noticed that my skin looked and felt amazing!
6. How did you decide what clinic to go to?
   We couldn’t find any hyperbaric oxygen centers near Nashville when we first started. The closest one was about 2 hours away, which meant we’d have to rent housing. I looked for places close to family so we’d have an easy time finding a place to stay, and then I called those places to make sure they treated pediatrics and they had lots of experience treating kiddos with cerebral palsy.
7. What about seizures and HBOT?
   It’s not uncommon for seizures to increase at the onset of HBOT, simply because the therapy increases brain activity. That being said, we’ve never seen a seizure because of HBOT (knock on wood!).
8. What is a round of treatment?
   The answer to this depends on a doctor’s prescription for treatment, but typically, for children with CP, a round of treatment consists of 40 dives.
9. What is a dive?
   A dive is one session in a hyperbaric chamber. For our treatment protocol, a dive is about 60 minutes long. It’s recommended to do one dive per day, so a typical round of treatment is 8 weeks long.
10. How can I find more information?
    I have found the best and most helpful information from other special needs parents. For support groups on HBOT, I highly recommend two Facebook groups: HBOT for Pediatric Neurological Conditions and Parents for HBOT.

Have any other questions about our experience with HBOT? Send me an email or add a comment below and I’ll happily add it to this post.