[Kimberly]

#1061068

Hello – I’m so sorry to hear you are going through this with your son.

I have a couple of articles in PDF format that I can send if you’d like to PM me with your e-mail address. (Or you can directly e-mail info@ngdf.org). One article is about Graves’ & children; the other is about RAI.

The issue with RAI precautions is that radiation exposure is cumulative over a lifetime. The acronym that the pros use is "ALARA" — meaning that wherever radiation is involved, the goal is to limit exposure to others to a point that is "As Low As Reasonably Achievable."

Surgery to remove the thyroid gland would be an additional option for your son, although this approach also has risks and benefits. The one article that I have addresses some of the pros and cons of both ATDs and surgery.

Wishing you and your family all the best!

[chilborn]

#1017812

My 6 year old son had some symptoms of Graves since he was about 2 years old,(Difficulty sleeping, sweating really really bad,nervous for no reason, heat intolerence, rapid heartbeat, and frequent bowel movements, very hyper and difficulty focusing and retaining things learned) but didn’t become really sick until about 4 years old. When my son was 4 years old he started throwing up about 1 day a week just out of the blue, weight loss, waking up in the middle of the night with tremors, vomiting and his heart pounding so fast I thought it would rip threw his chest.

He is now 6 years old and just diagnosed with Graves disease 2 months ago, he was on methinazole the maximum dose and they couldn’t get his levels or heart rate to a normal rate, he also had an allergic reaction to the medication. So he has been taken off the medication and goes in next week for thyroid scaning for RAI. (I am so nervous and sick to my stomack with worry)

They say that RAI is the next step and that it is safe but I have questions I am not finding much answers for:

1) What should I expect after RAI ?
2) Will the RAI affect other parts of his body other then thyroid?
3) IF RAI is so safe then why does he have to stay away from other people? How can hecause them harm.
4) What are the RAI side effects?

If anyone has any suggestions, advice, or books to recommend please let me know.

Thank you

[samsmom]

#1061069

Hi-
My daughter was diagnosed with Graves when she was 5. She is 8 now and is scheduled for RAI this Thursday. We chose (or I should clarify and say that she chose) RAI after trying medication for three years. I was hopeful and would cross my fingers every time they took her off to see if she was in remission. The longest "break" we had was for 6 months. But before jumping to RAI you should discuss all of your questions and concerns with you endocrinologist. If you do not have a pediatric endocrinologist then I would highly recommend that you try to find one. Not all endocrinologist have experience in working with children’s Graves since it is not common. We drive an hour and a half to a childrens hospital but it is worth the trip.

I hadthe same concerns that you posted about RAI but I’ve asked a lot of questions. After three years this really is what we (my husband, daughter and I) feel is best for our daughter.

Best of luck to you on your journey.

[Author]

Posts