Re: I would like specifics on how Mito Cocktail has helped you or you ...

[Guest guest]

For Grace, the cocktail saved her liver, if not her life.

Before the cocktail, she had progressive liver disease, was unable to tolerate many foods, was very underweight and deteriorating very quickly.

She has been on her cocktail for a year now. Her liver function tests, are normal. (She will always have damage though.) She can eat most anything. She has went from the 30th percentile in weight to the 90th. Also she is doing quite well, metabolic speaking.

I cannot tell you she is cured from mito. She still has daily struggles with the disease. She still has brown outs, and she still gets "something new" regularly. We are fortunate that the new things she deals with are not life threatening and are, in the most part, treatable.

I can honestly say, that I don't think she would have survived this long without the cocktail.

I hope this helps.

Mommy to , , Bre-Anne, Grace, and our newest arrival is due Sept. 20 2004 http://www.BabyCountDown.com?baby= 4007 www.caringbridge.org/oh/grace

[Guest guest]

Hi Tamara,

It is hard to know exactly how the cocktail has helped Asher b/c it was started only a few months after he got his G-tube. Thus, he was getting much better nutrition as well as the cocktail. But, what I've noticed is, an increase in energy, development becoming "on track" for his age, increased muscle strength. Overall, he looks pretty "normal" now. I think it's due to both the g-tube and the cocktail. When we first started the mito cocktail, my husband and I used to look at Asher with surprise because he had so much energy! In fact, we were joking that we needed a day of rest and maybe should skip a day of the cocktail - we never would b/c it helps Asher so much, but that gives you an idea of the change we saw.

I know this is not true for every child, but it is what we saw for Asher. He's on COQ-10, Carnitor, Thiamine, and Riboflavin.

Good luck

Anne R (mom to Asher - complex III defect, and possible Complex I defect)

[Guest guest]

Asenath benifitted from the Carnitor when we first began using it

almost immediately. She went from having horrible migraines to much less

painful ones and days without them even. Since then we have seen a

progression in her health and have added quite a few other meds/suppliments

in the cocktail and have found her to be much healthier than she was before.

I must also confess that a G-tube and treating her CNS Vasculitis is also

part of her healthier life. She still has quite a few issues to deal with,

but is not the frail little girl she used to be.

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

>From: albregra@...

>Reply-To: Mito

>To: Mito

>Subject: Re: I would like specifics on how Mito Cocktail has helped

>you or you ...

>Date: Sun, 1 Aug 2004 15:53:52 EDT

>

>For Grace, the cocktail saved her liver, if not her life.

>

>Before the cocktail, she had progressive liver disease, was unable to

>tolerate many foods, was very underweight and deteriorating very quickly.

>

>She has been on her cocktail for a year now. Her liver function tests, are

>normal. (She will always have damage though.) She can eat most anything.

>She

>has went from the 30th percentile in weight to the 90th. Also she is doing

>quite well, metabolic speaking.

>

>I cannot tell you she is cured from mito. She still has daily struggles

>with

>the disease. She still has brown outs, and she still gets " something new "

>regularly. We are fortunate that the new things she deals with are not

>life

>threatening and are, in the most part, treatable.

>

>I can honestly say, that I don't think she would have survived this long

>without the cocktail.

>I hope this helps.

>

>

>

>

>

>

>

>

>

>Mommy to , , Bre-Anne, Grace, and our newest arrival is due

>Sept. 20 2004 http://www.BabyCountDown.com?baby= 4007

>www.caringbridge.org/oh/grace