The Decision to Try HBO Therapy

This is from an email that I wrote to clarify some issues on HBO and to share the decision making process I went through to come to the decision to try HBO with my son.

They(doctors working in the field of HBO) are not saying that HBO revives dead brain tissue. They are saying that there is an area around a brain injury(around the dead tissue) that is not dead but is not getting a complete blood supply and is laying dormant--not at full function. They are saying if you get the O2 to that part of the brain that those cells will start to come back to full function. They do agree that over time without full blood supply these dormant cells will start to die off. That is why the earlier the treatment is done--closer to the time of the brain injury--the more improvements you will get. That is one reason I don't want to wait any longer then I have to get treatments. I have already lost 7 years. I researched HBO very carefully. I had lots of concerns:
1)fire--how likely is there to be a fire in the chamber. I wanted to know that Kyle and I would be safe in there. There are no 100% guarantees but all the reports I have read on fires in chambers were because someone brought in an ignition device--these incidences were all oversees.
2)Seizures--you know, I hope, by now that I am very careful with Kyle when it comes to increasing a seizure risk. I will not do something I feel will induce them. I have a paper on Seizures and HBO and would be glad to share it with you. Parents have actually been able to take their children off of seizure meds after HBO or have seen a significant decrease in seizure activity--this is one of the things we are hoping for--we want Kyle off meds someday. You are really not at a deep enough pressure--deepest should be 1.75 ATA or 25 feet--to have to worry about seizures because of the pressure. And they increase and decrease the pressure slowly so that decreases the chances of inducing a seizure.
3) O2 toxicity--this can cause lung problems and seizures. Again at 1.75 you should not have a problem with O2 toxicity. You see that over 2 ATA. If you do have an O2 induced seizure as soon as they turn the O2 off the seizure will stop.
All the above kept me from doing HBO for a long time. I researched and talked to doctors and parents until I felt comfortable trying this with Kyle. I am glad we are here doing it now and I hope we see some benefit. If not I can say we tried and not have the feeling of never knowing because I didn't try. One reason I felt I had to do it was because I thought about Kyle as he got older. If he found out that we had the chance to do this for him and we didn't do it, and later they come back and say that it really helps --how would that make him feel?
I thought I would just give one mom's perspective on coming to the decision to try this, oh so controversial, treatment. It wasn't easy and I was scared to death the first treatment because I had no idea what to expect and how Kyle would react. I was worried about seizures even though they are unlikely and the treatments are not fun. The compression is very hard on the kids --ears popping or getting clogged and they do not like it. Once they are down now they are fine and decompression is not as bad. They monitor their ears before we go in the chamber each time. Kyle's were red and irritated but never very badly and they are getting better now.
Through all of my research and therapies we have done with Kyle I have found that the non-traditional have helped him the most. We have seen great things with TES--standing on affected leg and almost able to hop on it now--never thought we would see either of these. Some doctors still say you will get no benefit from TES but I know differently as do many parents. Same with HBO and I am hoping for the best. I am not looking for a miracle because nothing will give us that. Only one person is capable of that one, but I am hoping for improved function--less spasticity, higher seizure threshold, better gait. If we get none of that at least I can say we tried and know that I am honestly and safely persuing every avenue available to help Kyle.
April, mom to Kyle(6) rt hemi, seizures
KidPower Family Support Resource
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Copyright 2000 by April Hernandez for KidPower Family Support Resource. Please do not reproduce without permission.