mestinon

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Dalsmith@... wrote:

> I was just reading about the Mesatonin and am now

> wondering if it is going to be a possiblity for son. He has so

> many weird drug reactions.

Well my daughter had also had many serious drug reactions because of her

dysautonomia. Many of them were cardiac in nature and they were very

cautious about starting it. But we titrated the dose up very very

slowly, allowing her to get used to it, over a long period of time. I

think it actually took about 6 months or longer to get her up to the

theraputic dose.

> Was your daughter's ptosis worse at night?

In the beginning it was worse when she was tired, or worse at the end of

the day. However, by the time we started the mestinon, she had some

degree of ptosis all the time. It is very evident in her school

pictures, during those years. In fact, when my youngest was being

evaluated at Cleveland Clinic, for mito, the doctor noted the ptosis in

my other daughters photos, and asked about it, before I even had a

chance to mention her symptoms or history. He picked up on the flat

tone in her face as well.

> son is pretty good during the day, but by bedtime, the lids are

> half down. It is definitely worse on school days or after reading for

> a long period of time. It definitely fluctuates.

Sounds like it is very fatigue related. Genny's was too, it just became

more and more apparent, as she got older. My other two will also get

sort of droppy eyed when they are really tired, but it is much milder.

Mestinon is not a drug to be taken lightly, but it is definately worth

trying if the ptosis becomes a significant problem. For my daughter it

has made a huge difference. It improved her swallowing/choking, facial

tone, ptosis, deep tendon reflexes, and probably her gut motility.

Jeannine