Re: We are back from Cleveland...

[Guest guest]

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Have been thinking about you hun!!!! So glad you all made it back

to Cleveland and were able to get the further testing done and all went

well. It took Madison about 3 days to want to weight bear after her

biopsy a few years ago, so hopefully Miranda will begin trying here in

the next day or so.

I don't know if we get the best CoQ10, but we have just been getting

ours at GNC in capsule form. Chance is able to swallow the capsules,

but with Madison I have to open it and mix it with some chocolate syrup

for her to take and its worked pretty well this way. I don't know

if its okay, but it would seem like you could just open the capsules and

put them into her G-tube. Surely someone else will have better info,

but just wanted to share what we are doing. Another option is to

find a pharmacy that will compound the CoQ and Carnitor together (might

even be able to get insurance to cover the CoQ10 this way) and then its

liquid and I assume you can put that into the g-tube. Hope this helps

hun!!!

I do SO understand being torn about what you want to come of the biopsy

results. I am sitting on the fence right now, as I was supposed to

call and remind Dr. C about the skin biopsy results (yep, already time

for those to be back) and have yet to do it!! Am hoping I have it

in me to make the reminder call tomorrow. Just know I am here if

you need to talk friend!!!

BIG hugs,

Kass, proud mom to Chance(7), and Madison(4)-mito, and Abby(3)

The Lappans wrote:

Hello

all,

We just got home from Cleveland yesterday. Miranda saw Dr Cohen and then

she had her muscle biopsy. It went as well as thing could go but she is

still refusing to walk at all. Hopefully that will go away as she feels

better. Dr Cohen started her on Carnitor and COQ10. The pharmacy

had to order the Carnitor and hopefully we will have it today. I am still

doing research on where to get the CoQ10. I did not get a perscrition but

after talking to the pharmacist, she said we could try to submit it to

insurance and see what happens. Now I have to try to get the perscription

from them, UGH. Where do all you guys get it from and whats the best way

to get it through a gtube?????

Dr Cohen also increased her Periactin in hopes it will reduce vomitting

and therefore stop some pneumonia's. I told him I was very torn in how

I felt about what to want when it comes to the results of the biopsy. On

one hand I want them to say, yes, its Mito and then our search for answers

would be over. On the other hand, then I have to admit that she does actualy

have something. Dr Cohen said, We know she has Something, Its just a matter

of what. Its such a confused feeling. I am sure you all know what I mean.

As usual, thank you all for listening and understanding.

[Guest guest]

My daughter is on a vit. cocktail, and the pharmacy compounds it into

liquid form. However, the CoQ10 would only be effective for short

pd. of time, so we now get this in capsule form (exact amount) and I

just pour powder out of capsule onto a spoon and put it in her

mouth. Finally, we did get insurance to pay. Hope this is helpful.

Bethany, mother of Grace, 19 months.

> Hello all,

> We just got home from Cleveland yesterday. Miranda saw

Dr Cohen and then she had her muscle biopsy. It went as well as thing

could go but she is still refusing to walk at all. Hopefully that

will go away as she feels better. Dr Cohen started her on Carnitor

and COQ10. The pharmacy had to order the Carnitor and hopefully we

will have it today. I am still doing research on where to get the

CoQ10. I did not get a perscrition but after talking to the

pharmacist, she said we could try to submit it to insurance and see

what happens. Now I have to try to get the perscription from them,

UGH. Where do all you guys get it from and whats the best way to get

it through a gtube?????

> Dr Cohen also increased her Periactin in hopes it will

reduce vomitting and therefore stop some pneumonia's. I told him I

was very torn in how I felt about what to want when it comes to the

results of the biopsy. On one hand I want them to say, yes, its Mito

and then our search for answers would be over. On the other hand,

then I have to admit that she does actualy have something. Dr Cohen

said, We know she has Something, Its just a matter of what. Its such

a confused feeling. I am sure you all know what I mean.

> As usual, thank you all for listening and understanding.

>

>