Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • Ski
      Post count: 1569

      Hi Janet,

      Wow, three years old. She’s lucky to have you "at bat" for her.

      We had a conference a few weeks ago, and one of the sessions was a "Q&A with the doctors" over lunch. There was a specific question about pediatric patients, and our medical advisor said that he would not recommend RAI for children ~ I think he drew the line as old as 18, before it would be a treatment of first choice. This wasn’t based on past experiences, or statistics on treatment, because there are really very few pediatric Graves’ patients. It was just a "cautious" approach, as radiation exposure is a cumulative, lifetime thing. The dose we’re given is fairly small, empirically speaking (cancer patients get 20 times as much), but the exposure risk just isn’t well documented in people who have so many years ahead of them.

      The meds may not have a high percentage of success, but if you’re within that percentage, great! It IS possible, or there’d be a zero percent success rate. Of course, another consideration is that a three year old is going to be tough to corral and ensure steady compliance with taking the meds ~ one of the ATDs needs to be taken three times a day, I believe. The other can be taken once a day. Truly, I don’t know if either is preferred or restricted for children. I don’t think so, I think you have the choice of either (PTU has to be taken multiple times throughout the day, methimazole can be taken just once).

      The decision belongs to you. Don’t let anyone bully you into something that you are uncomfortable with.

      This is going to be a tough road for all of you. I would suggest that you try to have a conversation with your daughter, at her level of comprehension, to help her understand that this is not like a cold she’ll get over in a few days, or weeks, it’s something you will be managing all of her life, at some level. It gets easier with time and treatment, certainly, but levels still need to be maintained, and thyroid hormone levels can change throughout her life for many reasons ~ age, activity level, hormonal changes (puberty, pregnancy, menopause) ~ so it will be something that she’ll need to have "on her radar" always. Reassure her that you’ll be there, I know that will help. Tell her you understand that it may cause some behavioral changes, and that if she can help you to understand how she’s feeling, you can help her through those as well.

      One of our classic symptoms is what we call "Graves’ rage" ~ when I felt it, it was truly uncontrollable, I’d be dealing with something fairly well and suddenly I would just blow up. Naturally, a three-year-old is a bit "unconscious" when it comes to her feelings and motivations, so this is a topic to explore gently, but she may still be able to tell the difference over time, which will also help you.

      I’m so glad you found us. Good luck, come back and ask any questions you may have!

        Post count: 398

        Ski gave you the information we got at the conference. This is the 4th or 5th 3 y/o in about three weeks! Did the Pediatric Endo tell you more specifically WHY the recommendation of RAI? Sometimes children (as well as adults) are not able to tolerate the anti-thyroid medications, and then one of the other two treatments becomes necessary. Let us know if there is more to the story. Take care. I, too, am glad you found us.

          Post count: 18

          My daughter (3 yrs old) was just diagnosed with Graves on Monday. Her levels are very high and we already saw a Ped. Endo. yesterday. I was told of our options and am worried: meds with only 25% chance of them working and RAI treatment. The Dr. recommends the RAI, my husband agrees. I, on the other hand, am not sure. For you that are going through this, do you think this is the right way to go? Any help or suggestions/comments you have would be wonderful! I’m very new to this diagnosis and treatment.

            Post count: 18

            I am glad I found you guys too! Your site has been a blessing to help with some of my worries!

            The Ped. Endo. recommends RAI because she feels the risk of the white blood cell count dropping too great. She feels long-term wise that RAI is a better route to go; as my daughter’s condition after RAI will be more easily managed and the med (Synthroid) will be less toxic to her. She mentioned that with RAI SOME studies have shown a greater risk of cancer later in life. But she said that more recent studies have shown no difference, especially in the low dose of radiation she will be receiving.
            I appreciate all the info and will be checking with you often!

              Post count: 32

              Hi Janet,

              I’m new to all of this too, so I can’t help you with the Graves’ aspect but as the mother of a (now adult) child with a chronic illness, I understand how you feel. Your daughter isn’t the only one going through this – your whole family is! I hope you can find a support group of parents with children with disabilities/chronic illnesses so that you have a place to talk about how tough it can be. If not – or maybe in addition to – find a good counselor that you can connect with. The help he/she can give you will be invaluable. You and your husband will need help along the way; don’t be afraid to ask for it!

              Best of luck to you,

                Post count: 8

                Hi Lynne- our daughter was diagnosed with Graves June 08– she tolerated and improved so much on methimazole for 8 weeks and then she became allergic– she had a severe reaction. Left with no options (likely she would react badly to PTU too-and surgery is not an option really for a child) she had RAI treatment 6 weeks ago. We are still coping with many symptoms but she is 12 and able to discuss how she feels and work with us as best she can–and when she is able. She has had lots of difficulties though as she also has type 1 insulin dependent diabetes (auto immune) I have been reading Thyroid Solutions and I just started The Autoimmune Epidemic by Nakazawa to help me better help my daughter. I wish we could attend a support group or find more help around this but sadly this is an unusual situation for a child be in and there is little to offer in the rural area we live in. So I just wanted to reach out to you as you are not alone and perhaps we can form a group online for parents of children with graves and other related auto immune issues? take care- grace

              Viewing 6 posts - 1 through 6 (of 6 total)
              • You must be logged in to reply to this topic.