My 6 yr old daughter was diagnosed with Graves & did not respond well to Methimazole. We are now on PTU but that is not going well. Surgery seems to be inevitable. Trying to do research on surgeons. Any suggestions? Where is the BEST place for treatment?
I agree with you on surgery. Ridha Ahrem, author of The Thyroid Solution, does not recommend RAI for Graves in children, but surgery. There is a slight risk of stomach cancer in a ten year study (8 percent) for RAI patients. No studies have been done beyond ten years.
I suggest you get a doctor who does at least two of these surgeries weekly. The below website lists endos recommended by their patients. I believe some surgeons are on there as well: http://www.thyroid-info.com/topdrs/
The below surgeon is in Austin, but patients from all over the world see him: http://www.thyroidcancer.com/
He doesn't just do thyroid cancer. It is important to find a surgeon who will be cautious with the parathyroid glands and who will know how to transplant them if necessary. Otherwise, your daughter will be on calcium pills forever.
After surgery,some endos may want to put your child on a T4 only hormone like Synthroid. Please be advised that many patients do not do well on strictly T4. Another woman on this forum, Maggiepieanne, has a daughter with no thyroid. Please contact her. She'd be more than willing to share her experiences.
Many, many people have thyroid surgery with no ill affects. Your daughter will be in good hands with the right surgeon.
I have a six-year-old. I am watching her like a hawk and praying that she does not inherit her mommy's thyroid disease. I'm so sorry that you and your little one are going through this.
Also, BMXdad has a son with Graves. I believe his son has had the surgery by now. Try contacting him as well. Many times our members aren't always on the forum, but we are more than willing to answer messages that are sent directly to us.
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