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Re: Miaja

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Genie-

I'm sorry I took so long to reply to you! I've been very bad about keeping up with this group! I did, by the way, go out of town for a few days to go to a Duran Duran concert with my childhood friends-what a blast! I also had the bladder infection, so I'm kinda slow these days!

Anyway, don't be sorry about my daughter-she is doing GREAT! Even her doctor's say she is a miracle! Yes, she takes meds for the ADHD. We were against it at first, but realized that she couldn't function at HER best without them. The medication works wonderfully-it's just not long enough! Her prognosis is good. She has full life expectancy & could maybe even have children of her own someday. Although she says she wants to adopt-she wants a child of every race! She's such a sweetie! She attends school with "regular" kids & only receives Occupational Therapy as a special service. Most people don't even know she has this condition.

I' was so sorry to hear about your child. Even with 2 miscarriages and the things we've been through with Lexi, I can't imagine what that could be like. Losing a child has to be the most painful thing for a parent to go through. Are you 2 ever thinking of having another child? You seem like you'd be a wonderful mother.

Take care & God bless you,

Miaja**

MiajaHi Miaja, Was VERY SORRY to read about your daughter's health. Have doctors RX'd any meds for the ADHD? Or, isn't this an option - because of the primary medical condition? Hate to broadcast my ignorance... but what is the long term prognosis for her? (If this is painful to discuss, please disregard any/all questions.) Although your post is sobering, Miaja, it's apparent that you have accepted your fate with (admirable) grace and quiet dignity. I wish you and yours... God's greatest blessings. Genie

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  • 6 months later...

Yep, you're right, Miaja -- we are definitely all different in the way

we respond to these meds... I am also thinking about trying the

combination you mention below (Armour with T4), or even just

Armour alone.

Good to hear from you, gal! How's the biz?

> > I take 10 mcg of Cytomel with 88 mcg of Levoxyl.. I thought

that

> > the Cytomel was on the low side. I don't know, the stuff has

> > become almost like water for me.. I don't think it's helping at

> all...

> > until I stop taking it, then I feel awful.

> >

> >

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  • 3 weeks later...

Sounds good, Miaja -- sending my best to your little ones. Would be fun to meet

some

time. What does your daughter see an endo for, just curious? Have you found a

good one?

Take care,

> -

>

> Sorry, I don't know ANY chiros in SF. Ask me about any pediatric

> neurosurgeons, neurologists, endocrinologists, or neuro-

> opthomologists in SF & I can refer! (Yes, my daughter goes to an

> endo, but not for thyroid!)

>

> Oh, I love 9 month old babies! That is such a cute age! Have fun!

>

> I'll be in SF next week for her check up from the surgery & an appt

> with a new neurologist. She'll probably be ready to go straight

> home after that! We'll have to meet up when I'm in the city for

> fun, not for appts!

>

> Take care hun,

> Miaja**

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Well, she hasn't had any endo problems so far, but she is at risk.

Hydrocephalus affects the brain and anything in it, like the

pituitary gland. Some children with hydro will produce no growth

hormone. She has been growing fine, so I don't think that's a

problem. Also at risk is premature puberty. We are checking for

that, but I think she's ok so far (no symptoms).

It's hard to tell if we have found a good one because she doesn't

have any endo problems. The one we have gone to at UCSF has since

retired (she was VERY old). She saw another guy there once & I

HATED him. He was actually chewing gum through the appointment!

She will be going to a new one pretty soon here. Hope it's a good

one!

Take care,

Miaja**

> > -

> >

> > Sorry, I don't know ANY chiros in SF. Ask me about any

pediatric

> > neurosurgeons, neurologists, endocrinologists, or neuro-

> > opthomologists in SF & I can refer! (Yes, my daughter goes to

an

> > endo, but not for thyroid!)

> >

> > Oh, I love 9 month old babies! That is such a cute age! Have

fun!

> >

> > I'll be in SF next week for her check up from the surgery & an

appt

> > with a new neurologist. She'll probably be ready to go straight

> > home after that! We'll have to meet up when I'm in the city for

> > fun, not for appts!

> >

> > Take care hun,

> > Miaja**

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