Re: muscle biopsy...

[Guest guest]

Tina

was playing soccer two days after his biopsy so it dind't bother him too much. He said it hurt a little but not a huge deal...very few of the kids have had a really hard time but it has happened before.

If it were me...this is just my opinion...I would go for the full gammit at one time. I would get FRESH only and get allt he labs, the spinal tap, the skin bx and all at one time. Otherwise you may be wasting time. If you get a skin biopsy and then have to wait a month or more to get it back...then get a frozen biopsy and have to wait two months for it to come back and you dont' have any conclusive results, then you have wasted time and pain for nothing. Then if you opt for FRESH that takes about three months for conclusive results so there you are six months from now and you could have done it in three. Fresh biopsies sometimes dont' yeild results but its the most sophisticated tests they have for mito to date so you will know you have done all the testing possible. didn't really look like mito by labs or early tests but it was just a matter of feelign like we had exhausted all the other possibilities. While it is rare for a child who doesn't get sick until they are 5.5 to progress so quickly, my son died 18 months to the day we realized something was wrong (11 months to the day he was diagnosed).

In my opinion when you are talking about putting your child through procedures, why not do the best test you can do the first time? but thats just my thinking and I know everyone feels differently!

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com