Re: Re: Another mom to Amy's Pam/reply

[Guest guest]

Hi, ,

Yes, I agree that more parents and school professionals need to be aware of

thyroid disorders in general, and Graves' specifically. I read somewhere that

a fair number of children may be diagnosed with ADD/ADHD when it's actually a

thyroid problem. Wonder if the use Ritalin would decline with more

awareness. . .

Amy is now 15 and is not in remission, although we are hoping to see that at

some point, perhaps in the next year. She was diagnosed 18 months ago and I'm

told it can take a couple years to go into remission. Her endo feels she has

a very good chance of this happening.

As to correspondence, that would be fine with me and Amy said she would try

some correspondence. She's pretty busy with school things and still gets

stressed easily if she feels she has too much to do. Part of this is Graves' I

think and part is her personality. We keep working to reduce stress in her

life.

I believe that having Graves' for at least three years before she was

diagnosed actually contributed to some habits in her thinking that we're having

to

change now, such as self-imposed pressure to do everything perfectly and

getting easily stressed over little things.

It is strange about our family's health taking such a drastic turn; we've

always been quite healthy and now I have two daughters (out of four children)

with autoimmune issues. We did have the girls tested after Amy was diagnosed

(we

have identical twins that are about to turn 18) just to make sure there

wasn't anything going on their thyroids. Although thyroid testing turned out

fine,

this was where we first spotted the problems with Raynaud's that seems to be

leading to Mixed Connective Tissue Disease or Lupus. Having battled so hard

for Amy has helped me prepare for this new challenge, although I consider what

could happen (in the future) with my older daughter to be more difficult. At

least, though, I don't have some doctor pushing for radiation of her thyroid

or any other body part!

Take your time in responding; we're often off line for a few days at a time

with busy schedules and we're due for some travel in the next two months, so I

may not be very timely with seeing posts or responding. I'm just glad I can

be of some help. This is a tough road to walk when we're thinking of our

children's health and the major decisions facing us, not to speak of resisting

medical professionals who think we're nuts for not going along with them.

Disregarding the " top " endocrinologist at our Children's Hospital has been very

empowering for me and has opened my mind to the idea of truly pursuing all

avenues

when facing difficult/dangerous health issues.

Take care,

Pam

In a message dated 8/13/2003 5:04:26 PM Central Daylight Time, harcho@...

writes:

>

> Dear Pam,

> Thank you so much for writing -- it's hard to describe the feelings

> to finally hear from another mom of a teenager with graves disease. We

> were starting to wonder if it was very rare. Seems like it comes with

> its own set of issues, the combination of this odd, multi-symptom

> disease mixed with the changes of puberty and adolescence. And it does

> sound as if we might have a lot in common.

> I have a cousin who's a pediatrician, and he was recently at a

> conference where the main speaker was a pediatric endocrinologist who

> spoke about thyroid problems. Near the top of the list of symptoms for

> children with Graves: trouble in school! If only there was more info

> available to GPs (and school systems) (and parents), maybe kids could

> be diagnosed earlier.

> How old is Amy now? Is she in remission? Lillie has said she might

> like someone around her age to correspond with.

> I'm so sorry to hear about your other daughter's illness. I don't

> know anything about Raynaud's or MCTD, but i know how serious Lupus

> can be.

> Things are crazy here at the moment, and I might need to be away for

> a few days (sick dad), but I look forward to hearing from you again

> soon -- and from any other moms out there! I wish I had more time to

> fill out this note, but will write more soon.

> Gr

>