If you remember, I posted a while ago about being able to take Ana to HBOT, which was postponed for January. That was a plan having in mind her PVL findings on her MRI.
Now, after this roller coaster of testing and diagnosing is kind of over, it seems that her abnormal MRI findings are not PVL per se, but changes to the white matter because of her dx, congenital muscular dystrophy. MRI films are sent to a specialist for review, but haven't heard yet.
I'm not sure now whether I should take Ana to HBOT center or not. If it's not PVL, i.e. injury due to lack of oxygen, how's HBOT gonna help?
You are not paying to go right? How much is it going there going to cost your or inconvenience you and your family? I think it can't hurt, may or may not help. There are still mri changes so it might be beneficial. HBOT is somewhat controversial anyway but if you have a good opportunity it might be worthwhile. Good luck with your decision. Thats just my 2 cents.
I researched HBOT a bit back in the summer when a good friend's child experienced a near-drowning. I read about the benefits and current indications...many not covered by insurance yet. My friend's child did not survive, and although HBOT was being planned, she could not live long enough to begin treatment.
From what I read and from meeting a mom at the park one day who has a hyperbaric chamber in her home for her autistic child to use, I could see no drawback to its use. I even read how parents accompanying a child in the chamber felt so great after being in it. They had more energy and just felt better. So if there is no harm to be done, and you would need to research this yourself, not base it on my reading, of course, then why not go for it? I don't think anyone knows exactly how or why it might help things that scientists are not even considering yet. What if it can help??? Shoot, I am even thinking about trying it for my kiddos. Both have low tone with likely diagnosis of mitochondrial disease. I have read a few sites where parents have their mito kids on oxygen and they have lots more energy! What if this could be the same for HBOT??? So I think if I were you and money were not an issue, or even if it was since we would do anything for our kids as long as we can keep them fed and a roof over their heads, then I would go for it. I hope your insurance will cover at least some of it! PLEASE keep us posted on your decision. Blessings, Clara-Leigh
Garrett, 4 years old, mild congenital myopathy,possibly MITO so hypotonia, g-tube from December 06-Fall 07, constipation, gross motor and speech delay, heart PDA repaired by hearth cath. Winter 08. OT once monthly, PT two times weekly, Speech 3 times weekly, water therapy weekly and as many horseback rides as we can fit in at home!
Addie, 8 years old, mild congenital myopathy, possibly MITO. Low tone, tires easily, poor endurance. PT weekly, regular swimming and rides horses 3-4 days per week and competes in barrel racing and other timed events.
Ainslee, 6, just about too normal some days, but really patient with all of her siblings' therapies!! Oh, CONSTIPATION...how can one forget that???
