question about muscle biopsies in toddlers

[Guest guest]

So they are scheduling for a muscle and skin biopsy. They

wern't going to initially because his carnatine and lactic acid came

back normal (after being low and high respectively in May) and the

doc thought it was a fluke, but a whole whack of other tests have

come back this week all waay out of line, so they are repeating the

carnatine and lactic acid, and are already talking about starting

BRandon on the mito cocktail as early as tuesday depending on those

results.

soooo...

i want to hear about your experiences with muscle biopsies...

how long does it take to recover?

are they in alot of pain afterwards?

brandons 21 months, and VERY active... im assuming his leg will

hurt for a while after...

how does the scar heal? (I know petty, but im curious) The doc said

he would have a 3-4 inch incision on his thigh, i can imagine that

would leave a hefty scar... is it very visible after a while?

anybody have any bad experiences with it?

[Guest guest]

Sheldon had his muscle biopsy in Dec. at 27 months old. His scar

is an inch and a half long. Recovery was surprisingly easy for him. He

also is pretty active and we were afraid he wouldn't know to be

careful of it but he didn't seem to have too much pain. It seemed to

bother him a bit for a few days but it didn't seem bad. He was back to

PT a week after surgery I think. His scar isn't very pretty but I

think that depends on the surgeon.

Hope this helps. I also hope 's biopsy goes

smoothly.

So they are scheduling for a

muscle and skin biopsy. They

wern't going to initially because his carnatine and lactic acid

came

back normal (after being low and high respectively in May) and the

doc thought it was a fluke, but a whole whack of other tests have

come back this week all waay out of line, so they are repeating

the

carnatine and lactic acid, and are already talking about starting

BRandon on the mito cocktail as early as tuesday depending on

those

results.

soooo...

i want to hear about your experiences with muscle biopsies...

how long does it take to recover?

are they in alot of pain afterwards?

brandons 21 months, and VERY active... im assuming his leg

will

hurt for a while after...

how does the scar heal? (I know petty, but im curious) The doc

said

he would have a 3-4 inch incision on his thigh, i can imagine that

would leave a hefty scar... is it very visible after a while?

anybody have any bad experiences with it?

Please contact mito-owner with any problems or

questions.

Yahoo!

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[Guest guest]

Hi, Becca had her muscle biopsy done in June 97, she was about 31mo

at the time. She tolerated the procedure well, didn't really take

too long for her to bear weight on the leg, and 7yrs later, the scar

is a nice looking one. About a month after the surgery, we were

visiting a friend of mine, and Becca got a bit upset by all the

attention she was getting from my friend's daughters, and she

(Becca) picked at the scab/scar and it bled, so it's not the

straightest scar, but it's only 2- 2 1/2 inches long and looks fine

except for one little " blip " in it, where she picked it. We had a

skin biopsy done earlier that year, I think she was 28mo old at the

time, and Dr. Kolodny did 3 punch biopsies, and there is only a scar

for 2 of them, just under her left arm, you barely see it. Of

course, we did all these tests and still didn't have a diagnosis

until Sept 2003, so don't give up hope, they'll find a dx for your

son. Best of luck, eileen phelps

mom to Becca almost 10, Mitochondrial Depletion Syndrome, and Alison

7, just A-Ok

> So they are scheduling for a muscle and skin biopsy. They

> wern't going to initially because his carnatine and lactic acid

came

> back normal (after being low and high respectively in May) and the

> doc thought it was a fluke, but a whole whack of other tests have

> come back this week all waay out of line, so they are repeating

the

> carnatine and lactic acid, and are already talking about starting

> BRandon on the mito cocktail as early as tuesday depending on

those

> results.

> soooo...

> i want to hear about your experiences with muscle biopsies...

> how long does it take to recover?

> are they in alot of pain afterwards?

> brandons 21 months, and VERY active... im assuming his leg will

> hurt for a while after...

> how does the scar heal? (I know petty, but im curious) The doc

said

> he would have a 3-4 inch incision on his thigh, i can imagine that

> would leave a hefty scar... is it very visible after a while?

> anybody have any bad experiences with it?

[Guest guest]

We have had both our girls biopsies done during their g-tube placements

so that put them off their feet for a few days so not sure how much the leg

would hurt if done alone, but I do know our girl's muscle/skin biopsies

(done in same location on thigh) only was about 1 1/2-2 inches long and

within a half to one year Asenath's scar is already very pale and hardly

seen. As time goes on the child grows and the scar looks smaller as well.

At first it can look very raised and red and you wonder if it will look that

bad forever, but it always does get tons better! In the end, even though we

didn't get specific results as we had wished for Asenath (Zipporrah's is

still in Boston after 4 months), we still think it well worth the biopsy.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

question about muscle biopsies in toddlers

> So they are scheduling for a muscle and skin biopsy. They

> wern't going to initially because his carnatine and lactic acid came

> back normal (after being low and high respectively in May) and the

> doc thought it was a fluke, but a whole whack of other tests have

> come back this week all waay out of line, so they are repeating the

> carnatine and lactic acid, and are already talking about starting

> BRandon on the mito cocktail as early as tuesday depending on those

> results.

> soooo...

> i want to hear about your experiences with muscle biopsies...

> how long does it take to recover?

> are they in alot of pain afterwards?

> brandons 21 months, and VERY active... im assuming his leg will

> hurt for a while after...

> how does the scar heal? (I know petty, but im curious) The doc said

> he would have a 3-4 inch incision on his thigh, i can imagine that

> would leave a hefty scar... is it very visible after a while?

> anybody have any bad experiences with it?

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

anybody have any bad experiences with it?

***********************

Not really a bad experience,but an interesting one. When we went back to the

surgeon for Logan's follow up,he noticed that the inside stitches were popping

through his skin a little bit. I hadn't even noticed it. He said it was

normal,and not to worry. His scar looks fine,,a little red,but not bad. I have

noticed that the part that was popping up a little is kinda farther apart,than

the rest of it,but I think its ok.

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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