Re: Calling Moms of children with graves (was So Great!)

[Guest guest]

Hi Tosha, glad you made it over to this board. I just wanted to change the

subject line so that the other Mom's would see it and you would have a

better chance at responses.

Pam B.

-- Re: So Great!

My name is Tosha and I'm a mother of a 9 year old girl named who has

Graves Disease and has just been diagnosed after her great grandmother

noticed her thyroid was very large and swollen. I have never known anyone

with or heard of this disease before and I am expected to make a decision by

this Friday on whether or not to treat her condition with the RAI or to put

her on some kinds of medicines. I would appreciate any and ALL responses and

I hope to get many different opinions on this as soon as I can. I am not

really sure what the " best " route to take is considering there are

overwhelming amounts of information and I'm not sure what to think or

believe anymore. I WAS leaning toward the RAI because the doctors at Riley's

Children's Hospital are saying that is what they think I should do. They say

she will have to go to the hospital with every sore throat. Is this true? Or

just when she has a fever? What should I expect things to be like for us

now? PLEASE respond to this email, as I am really confused and unsure of

what to do and don't have much time to make my decision.

& Thank you and God bless all who take the time to respond.

[Guest guest]

Ok Tosha, I'm trying to find the answer about having to get blood tests

every time she gets a sore throat while taking the meds... and in the

meantime, I've come up with these articles by our Elaine who wrote the

book " Graves Disease, a practical guide " , maybe they will give you some

answers:

http://daisyelaine_co.tripod.com/gravesdisease/id18.html

Would someone please correct me if I'm wrong here - but I seem to remember

that the risk of sore throat related to ATDs is only in the first month or

two of taking the drugs - and if she has a baseline blood count and liver

panel done before she starts taking them it's very simple to just have

another draw and compare the numbers to see if it's the drug causing the

problems or a virus?

Gotta run now... will write more later.

Pam B.

[Guest guest]

Hi Tosha,

is much too young to ruin her life! Please do not let the doctors talk

you into RAI. Many people end up with thyroid eye disease, a painful

swelling of the eye tissues. already posted, I advise you to look at

her pictures and read her story. Then, many women who receive RAI end up

with fertility problems. Also, will need to be on medication the rest

of her life! She will need replacement thyroid hormone for the rest of her

days.

I have a son the same age and I can honestly say that I would NOT let anyone

administer RAI to him! Please, don't agree to RAI! Graves Disease is a

malfunction of the immune system, the thyroid is merely the victim. RAI will

nit in any way fix what is really broken, the immune system. Has she had

anti-body testing? That's the true measure of Graves, antibodies that trick

the thyroid into producing too much thyroid hormone.

On anti-thryroid medication there is an excellent chance that your daughter

can achieve remission! Yes, remission! No drugs and a normal life, that

should be the goal here. Tosha, I think by now you're discovering that most

of us with Graves do not want RAI as our course of action. And your

instincts told you not to do it, right? I'm going to assume you were

probably like me and thought to yourself " this just doesn't seem right " .

in MA, USA

Diagnosed w/Graves, March 1997

Glad I've refused RAI Treatment!!!

On lose dose of PTU (2 50 mg. per day)

(was in remission for three years 2000-2003)