Viewing 11 posts - 1 through 11 (of 11 total)
  • Author
  • npatterson
      Post count: 398

      Dear Shannon,
      I think what you are describing is block and replace, which is a standard treatment for children. It apparantly has not been successful, and you are now having to chose one of the permanent treatments, RAI or surgery.
      So far as the actual RAI treatment goes: they may repeat the thyroid scan and uptake, which will help determine the amount of RAI to be given. The day of the RAI he will be given either a pill or a liquid containing the RAI. He may be in a protected room (read: lead-lined in some manner). Then he will go on home. He may be told to do some things, like flush the toilet twice. The RAI is eliminated through the kidneys. He does not have to be isolated, though he may wish to leave pets that like to sleep on his shoulder (near his thyroid which is absorbing the RAI) alone. These precautions go on for about three days.
      He may have a surge of hormone escaping from his thyroid, as the cell walls are breaking down. If so, the symptoms will be the same, only possibly exaggerated, as his Graves’ symptoms: heart racing, sweating, shaking, weak, etc. Sometimes the doctors put the person back on the anti-thyroid drugs for a while (weeks) to prevent this.
      He will be tested fairly often (2-3 months) to follow his TSH. When it begins to go up, he will be put on levothyroxine to keep his TSH stable.
      I hope this begins to answer your questions.

        Post count: 3

        Hi. I am so glad to find your foundation. My son was diagnosed 3 years ago, at age 10 and treated to remission with methimazole and levothyroxine. He was taken off all his meds in May and now he’s totally out of whack. His ped endo is recommending RAI. I want to know more about how the actual treatment goes and what side effects he may have during treatment. I also would like to know what he will go through post treatment as far as testing and regarding levothyroxine. I will try to search for more answers in the boards, but I am not sure what to search to get these sort of posts. Thanks!
        Shannon <img decoding=” title=”Confused” />

          Post count: 8

          Hi Shannon, Our daughter is 12 and she had RAI 7 weeks ago. We were in the situation you are in surgery or RAI– (you can find my earlier post explaining more). It became clear surgery was not a safe option as there are not surgeons that have done this procedure thousands of times on children and it is a delicate surgery perhaps effecting the vocal cords. I have been told Graves is rare in children so that is partly why there are not skilled surgeons for this. So we decided on RAI. It went much as Nancy described–We spent the week preparing with various tests and then on a friday she had the dose and we were out of the hospital and home. We did take more precautions than mentioned for the 3 days at home such as washing her dishes separate from ours, using her own bathroom, not sharing bedding, clothing etc. We had a list of precautions and we followed all of them. She carries a card that she had radiation treatment also incase she sets off an alarm somewhere!! <img decoding=” title=”Wink” /> She has been taking SSKI twice a day to support the RAI treatment. She has had blood work done every 3 weeks. There have been ups and downs during the thyroid imbalance and lots of brain fog. She has handled it well and I have kept a close eye on her offering all the support I can. We received great news yesterday from Fridays blood work — she has gone hypo thyroid and we will start replacement therapy tomorrow. If anyone has advice for us in this next phase we are glad to receive it. So overall it has all gone well. I have read as much as I am able– this site has been very helpful and I found the book Thyroid Solution helpful too. I hope this gives you some reassurance– I would be happy to talk more as you go thru this. take care of yourself too– I know how stressful this is as a parent. grace

            Post count: 1324

            To Grace:

            I wrote a message this morning in response to Vicky’s "Old to Graves but still Struggling" message. In it, I detailed some of the issues about taking replacment hormone. You might find it helpful.

            Good luck.
            Bobbi — Online Facilitator

              Post count: 3

              Thank you all for this information. It really helps us to have the knowledge. Shannon

                Post count: 1

                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!

                  Post count: 18

                  Hi Shannon,
                  I also have a child with GD. My daughter (3) had RAI in mid Nov. She is doing very well. Since she is so tiny, the dose she took was small. Because of this the radiologist was fairly flexible with "restrictions". We had her flush the toilet twice for 2 days, washed her clothes and bedding separately, made sure no one else ate off her plate. She was told to sleep in her own bed (no-cosleeping) and not to be around many others (family/friends) for a day. We have a 2 year old who stayed at Grandma’s and Grandpa’s the day after the radiation. All of her eating utensils and such we washed with the others in the dishwasher.
                  My daughter did very well with the treatment. The scariest part for her was the actual thyroid scan. Hey, I’d be scared with that big maching coming so close to my face too! Her medicine was mixed with Kool-aid that she drank. My husband and I were with her the entire time – through the scan and in the lead room – where she drank her dose.
                  For a few days after the procedure, she complained of her neck hurting. Tylenol took care of that.
                  She is getting blood draws every 3-4 weeks now. Since her RAI her TSH is already coming back up; her T3 and T4 are now detected (still high) where as before they were so high and out of range no result was provided.
                  Her hyperthyroid symptoms (itching, restlessness, etc.) seem to be disappearing. She remains on her beta blocker, but I have a feeling that will start being tapered off as her heart rate is the slowest it has been since last spring.
                  Before my daughter had RAI, I had a very difficult time choosing the treatment path for her. However, surgery was not an option for me. And both ped endos we met with discouraged meds due to her increased risk of side effects.
                  I hope all goes well with your son.

                    Post count: 3

                    Well, we made the decision to go forward with RAI. My son did great. He has had some reduction in symptoms already. He will go in for a level on 1/9/09. I thank all of you for the support and information you have shared.


                      Post count: 181

                      I was just wondering, (maybe experts can explain) – why GD in children??? 3 years old, 7, 8, 10… Wasn’t GD supposed to be a middle-age ailment? Is it something in the environment that "helps"? The food? Or the parents passed it down (genetic factors)?

                        Post count: 1569

                        Hi elf,

                        GD in children is extremely rare, but it does happen (I guess that’s obvious….).

                        The experts that I’ve heard have only said that it’s more common in older patients, I haven’t heard any opinions about specific things that might make a child more "at risk" than another. I think we see a really high percentage of the child patients represented here, probably because it IS so rare, and there are very few places to go for information.

                        The standard theory for cause of GD is that a patient has a predetermined likelihood for autoimmune disease, then some environmental trigger (stress or something else) combines with a bodily weakness to bring on the disease. This is NOT proven, but it is the best idea currently. They have identified a specific defect in autoimmune patients ~ it is VERY early in the evaluation of that information. The defect can be found in some people without autoimmune diseases, but it is found in 100% of autoimmune disease patients. The process by which our body goes from having the defect with no disease, to having the defect AND a disease, is the process that is currently being researched.

                        The predetermined likelihood for autoimmune disease IS genetic.

                        As far as the other factors (diet, environment), nothing is known for certain at this time.

                          Post count: 3

                          My 13 yrs old boy was diagnosed with Graves. Currently on Methimezol. We are leaning toward taking him to Yale Pediatric Thyroid Center for surgery if ATD doesn’t work. According to Yale, it’s the only Pediatric Thyroid Center in the US. RAI really concerns me, especially for children. Can someone share their experience with Yale or any medical center that performed thyroid surgery on their children and how are they doing after surgery? We leave in Dallas FW area.

                          Please send me a email:

                          Thank you.

                        Viewing 11 posts - 1 through 11 (of 11 total)
                        • You must be logged in to reply to this topic.