Tuesday, November 10, 2009

Decisions, Decisions - HBOT or no HBOT?

It is very complicated to raise a child with special needs. While I want it to just be me, Chris and the girls making decisions for our family, the truth is that we need to bring in others to help us navigate our way through the cCMV, cerebral palsy and deaf diagnosis.

There are the various specialists, therapists, and alternative medicine practitioners that we consult(ed) over the last 2 years. I believe that the team we have on Team Emma is top of the line and wrote a bit about it in a blog post a while back. But, while I believe we have the best team working with us, I know that many of them know about the diagnosis at arms length - they do not live and breath it 24/7 like we do.

Throw in the complication of Emma having multiple (dis)abilities and the occasional conflicting opinions of the specialists and we realized quickly that Chris and I need to consult with the experts on our team and parents who live with similar circumstances to us and then chart our own course.

The internet is full of information and, while information is power it can also be confusing. There are loads of people trying to get you to buy into their philosophy or therapy. Many with testimonials from people who say how using *product* has changed their life.

At this point I feel that we have a great CORE treatment plan to help Emma reach her potential with the therapy she receives, the nutrition plan we are following and the careful monitoring of her progress. I also believe that the ancillary plan we have for Emma that includes craniosacral therapy and therapeutic riding have been extremely beneficial to her progress.

We are currently deciding if we should add a course (40 treatments) of Hyperbaric Oxygen Therapy (HBOT) since there are quite a few studies that have seen very positive results with HBOT for cerebral palsy. I have also talked to a few parents who highly recommend HBOT and have seen measurable results in their children after the treatment. We have also talked to members of Team Emma and there are conflicting views, so that makes it harder for us to make a decision.

For HBOT the convention is that the results are more measurable the younger you start so we should start NOW. The reason for our hesitation on this is the expense of the treatment (it is not covered by our insurance), the time associated with the initial course and how it would effect Emma. Since each child is unique, they respond differently to HBOT. There are children who see amazing results, some who have marginal results and some that have no noticeable change.

We are in the process of deciding on HBOT, so if you are reading this blog and have any thoughts on this topic please leave us a comment!

2 Comments from readers:

Tara Bennett said...

Good luck! I know you will make the right decision. If you do it, I'm anxious to see how it goes.

Anonymous said...

You leave no stone unturned my friend. I love it. I've not read much about this treatment, but I see mention of it now and then on my autism groups. Lots of parents of autistic children have said it was extremely helpful. I'm not sure in what ways though....