[hunt17]

in reply to: My son has Graves and we have questions #1075342

My daughter is 8 and has GD. I feel an obligation to share my experience where I can. We had a terrible year and a REALLY terrible month and if this can save ANYONE an ounce of stress it will be worth it.
I will try to be brief:
My daughter was diagnosed with GD, put on tapizole for 9 mos, reacted with hives, stopped the medication. That’s when things got really stressful for me.

We were offered the options of 1) PTU 2) RAI 3) Surgery….but in actuality we didn’t really have a choice. The local endocrinologists were pushing RAI because "that’s what people do" (probably because of the lack of experienced surgeons in the area). Even as I was saying, I don’t think I’m comfortable with this, they were making the appointment for my daughter. Somehow a radioactive 8 year old just doesn’t seem "safe" to me. I have seen too many things labeled as "safe" just to find out years later that "oops…we didn’t know it caused THAT".

As a desperate last resort, I called the Yale Pediatric Thyroid Center (Dr. Rivkees office) and through tears said, "My daughter is sick, can you help me?" (Mind you, I live in Oregon and Yale is in Connecticut! They treat children from all over the U.S.!)
IT WAS THE BEST DECISION I’VE EVER MADE. They reviewed her case and discussed the options (by phone)…we were advised of the options (they have an experienced surgeon) and I was able to reach a decision with no doubts that I was doing the right thing for her. They did NOT push surgery, nor do they…but they did offer the information for MY CHILD that helped me to make the right decision. You see, my local endocrinologist didn’t tell me that based on the size of her thyroid they would have had to give her a larger RAI dose and her cancer risk above average for gen pop. My local endo didn’t point out that with RAI the thyroid could regenerate and she could have to have it done again…increasing that risk even more. They just said "that’s what most people do". My endo also didn’t tell me that PTU is NOT safe for children. At the Yale Center, they had MORE INFORMATION and they are EXPERTS on GD…that is what they do. My finding was that our local endocrinologists are not and cannot be experts in pediatric GD because it is not that common.

We were scheduled for surgery within two weeks. We flew from Oregon to Connecticut and after meeting the doctors, she went into surgery on a Thursday and was released to go home on Friday afternoon. She was tired, but flew without incident back home two days later (from Connecticut to Oregon). The doctors were amazing and I am SO THANKFUL for them and their commitment to this cause. I will say that I would NOT have had the surgery done ANYWHERE else…I specifically made sure my daughter would have an EXPERIENCED surgeon. It was not an easy decision but it was without a doubt the right one for us. If you have any doubt whatsoever, I suggest looking online and just calling. It was the best experience I could ever have imagined for such a terrible situation.

By the way, my daughter is doing WONDERFULLY!

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