Thursday, September 20, 2012

Mito Awareness-Day 5


There are none....

At all....

The only thing we can do is manage symptoms. We can avoid stresses on Asa's body that require too much energy, like overheating or viruses or fevers. We use the feeding tube to keep him hydrated when he is sick. We make sure he gets sleep.

Other kids may need oxygen, BiPAP, TPN, trachs or other higher level interventions.

Asa gets occupational, speech and physical therapy at school to help him. He has been doing aquatherapy for almost a year now. It's been amazing too. Asa mostly refuses to do scheduled work but even "play" in the water is extra resistance he doesn't have on land. Asa has really been blessed with great therapist! From the time he was a month old until now.

There are other unconventional therapies like HBOT that likely help but are considered off label and are not covered by insurance. There is no denying that many kids have had great improvement though!

We've also tried other things that might help, like supplements and vitamins. Asa was on Coenzyme Q10, levocarnitine, creatine, folic acid and riboflavin in super high doses for many years. We'd add a few more in and take a few out. We really couldn't tell a difference at all after a while. At first there was a huge change in his energy level but once that wore off it was back to his baseline. Finally we just stopped all of the vitamins. Lots of kids have great success with the supplements though. And we may start them up again in the future.

There is a bright light on the treatment front. It is still many, many years away though. A new drug is being tested and has had great results in most kids. It's EPI-743 if you need details for your googling! I pray that this is a future treatment and that it is available quickly! It is not a cure though! We still need a cure!

Tomorrow, we'll cover why YOU should care about research and a cure for mito!!

No comments: