Re: Lactic acid, blueness around mouth, muscle atrophy, SLEEPLESS for...

[Guest guest]

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I looked at your page for Orion the other day, but I hadn't had a chance to

post in a couple of days . . .

I just wanted you to know that I thought it was a beautiful tribute to you

wonderful child.

Kathy

mom to (nda, 8) and (almost 3, Complex I and III defects)

[Guest guest]

-

I looked at your page for Orion the other day, but I hadn't had a chance to

post in a couple of days . . .

I just wanted you to know that I thought it was a beautiful tribute to you

wonderful child.

Kathy

mom to (nda, 8) and (almost 3, Complex I and III defects)

[Guest guest]

-

I looked at your page for Orion the other day, but I hadn't had a chance to

post in a couple of days . . .

I just wanted you to know that I thought it was a beautiful tribute to you

wonderful child.

Kathy

mom to (nda, 8) and (almost 3, Complex I and III defects)

[Guest guest]

Michele,

We are currently using periactin and chloral hydrate. In

the past we have used and/or tried Benadryl, Attarax,

melatonin, and Ativan. We have had good and bad luck with

these meds. The chloral hydrate has been the most

successful for the longest time. The downside is that as I

understand it, there is a theoretical risk of liver cancer

with its long term use. Since three docs have been

concerned about our use of it, I guess I need to do some

more research into the risks. I do have to say that the

health of our family in the present is very important to all

of us, and to be as healthy as possible (mentally and

physically) we all need to sleep.

We have also had good luck keeping Laney up late. When we

put her to bed between 8 and 9 pm, she would be up every two

hours. We started keeping her up until 1 am and she slept

much better. We have gradually edged back and she now goes

down between 10:30 and midnight. Not ideal, but it does

work best for us. Luckily I am an at-home mom, so I have

the flexibility to change our hours around.

I would like to say to everybody, that if anyone has info.

about the long-term use of chloral hydrate I would love to

hear from you!

Good luck Michele,

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

,

It does sound to me like your little one is doing the normal

newborn thing...especially since she does have periods of

awake calm behavior. As we are expecting our second right

now, I can put myself in your place and know it will be so

hard not to always be looking and worrying. I did want to

let you know that when we saw Dr. Cohen he said it is not

worth testing the new baby until they are 6 months old, as

newborns are kind of screwy anyway (My words not his:)!).

For example, having high lactic acid at 2 months of age

might not mean anything. But, that is also because we can't

find the actual defect yet--if you knew the site of the

defect than the test would be worth doing. I also have to

remember that even if the little one has the defect they may

show no symptoms--ever. Mito is a strange thing--so even if

you find out that the little one is affected, you still will

not really know--unless they start to become symptomatic.

Just my two cents, hope you don't mind!

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj