[Anonymous]

#1056555

Hello – I am seeking any information that anyone can give be regarding
Graves Disease in children. My daughter was diagnosed four years ago at
age 8. She underwent Radioactive Iodine therapy and has done well until
this year. Does anyone else have children with this disease? Any help
or encouragement would be appreciated. Thanks.

[Anonymous]

#1163734

You are only the second person on this BB who has said their child had
RAI. This treatment has historically never been given to children as
the long-term effects 30, 40 years later are not known. What did your
endo explain were the risks associated with RAI in children.
Also, medical records are only being kept 25 years now so there would
be no way to track these children after this time frame.
Are doctors thinking now that it is okay to do RAI in growing kids?
Why not surgery or anti-thyroid medications with no serious after effects.
Did they suggest these two other treaatments?

[Anonymous]

#1163735

Dear Joan,

Thank you for your message. Our situation was quite unique. We are
Americans living in Japan at a military base. My daughter was sent to a
hospital in Hawaii because of multiple fractures. While there it was
discovered that she had Graves Disease. We were given basically two
options. One was the anti-thyroid medication, but because of our living
circumstances, we would not be able to have her medically evaluated as
needed. The second option was the RAI. We chose the RAI because of the
underlying risk of leukemia, etc. with the anti-thyroid medication. I
hate to say that I was not as well informed as I should have been when
we made the decision. The basic problem with RAI with children now, as
I understand, is that they are often over-dosed. This happened in our
case and Katie has been hypo-thyroid within a month of the RAI. Surgery
was never an option that we discussed or cared to discuss. Katie has been
doing fine with synthroid, until this year. She began to enter puberty
and has had some medication problems along with joint pain, trouble in
school, inability to concentrate, etc.

[Anonymous]

#1163736

I’m sorry to hear about your daughter. It’s so hard to know what to do in any given case and to know if you have all the information you can possibly have when it’s time to make a decision. I know I made the decision to have the RAI immediately. I’m not sorry. My guess is that due to her age and the hormonal changes which go with it, it would be best to have her blood checked more frequently than you did in the past. I’d probably never wait more than 6 weeks. I would assume frequent adjustments to the level of replacement would be necessary. I have no reason to think your daughter will not again even out as she grows. The other thing to keep in mind is that some of the symptoms you describe are also par for the course (ALL pre-teens and teens have trouble concentrating at times and go through a million changes (a day in some cases!) I know you know that, and while I would always keep that in mind I would not allow that thought to keep me from staying on top of the blood level situation. I guess my best advice would be to: A) stay even and confident with your daughter and give her every reason to know that changes are normal for all teenagers and you’ll be there and B: Keep up the blood checks. Good luck. She’s lucky to have you for a mom!!

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