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  • snelsen
      Post count: 1909

      I’ve worked in hospitals for years and years. The main things that need to happen if she has a TT, total thyroidectomy, is she should be at a Children’s Hospital, with a pediatric surgeon, and an anesthesiologist who is skilled and experienced giving kids anesthesia. By being at a Chidren’s hospital, you can count on all care givers and docs, nurses and other health care folks, having experience and training with kids, AND they want to, and chose to work with kids. Many kids, including 8 lb babies have a general anesthesia if surgical procedures are needed.

      With all due respect to you endo, I heartily disagree with his comment about waiting until ages 8-10 for surgery. He is not a surgeon, he is not a pediatric ophthalmologist, or any kind of eye doc. “Waiting,” if your daughter has TED, thyroid eye disease, and does have optic nerve atrophy, will result in permanent blindness that cannot be reversed or fixed.

      Can you get to a pediatric eye doc? well, I just re-read that she was seen by a thyroid eye disease specialist, I did not now there was such a thing. But good that this doc is familiar with TED. One question I have, is how about a CT scan, that usually shows the results needed, along with other vision tests designed for kids. Rather than an MRI? You can certainly ask the question. An MRI would be much more frightening, for it is long series of very loud noises. She most likely would need to be sedated for that, for sure.
      If you can get to a peds eye doc, do it.
      Do write again. I know my suggestions mean more research, more phone calls. But especially she needs a good eye exam to determine if she does have optic nerve atrophy. That can’ wait.
      shirley

      Kimberly
      Online Facilitator
        Post count: 4286

        Hello – Just a quick note to add to Shirley’s comments, the guidelines in the U.S. (I know that you are overseas) do not place an age restriction on thyroidectomy, but they do recommend that the surgery be done by a high-volume surgeon who is specifically familiar with the procedure in children.

        They do not recommend RAI at all for children under 5, and they note that RAI should only be used in children 5-10 years of age if they can be treated with a low dose of radiation. You can find this guidance in the “Treatment Options” thread in the announcements section of the forum.

        So sorry that your daughter is going through this – hope that she can get some relief soon!

        wendyh
          Post count: 16

          Hi all

          My daughter just had mri scan for suspected brain tumour thank goodness there was no tumour. However, there was an abnormality showing up on the frontal lobe of her brain which causes speech problems, emotions etc. I was told this could be inflammation or a reaction to something or just a defect that has always been there which I find strange. Do you think this could be caused by graves disease and do you think a brain specialist would ge a good person to see. She is having another scan in three months to see if there are any changes. Any advice would be appreciated.

          snelsen
            Post count: 1909

            She should be seeing a pediatric neurologist. Can you find on in your area??
            Shirley

            Kimberly
            Online Facilitator
              Post count: 4286

              Hello – Agree with Shirley…this is not something I’ve seen associated with Graves’, although of course we are fellow patients here.

              Sending {{{hugs}}} to you and your family! So sorry that your little one is going through this.

              wendyh
                Post count: 16

                Hi. Havent been in touch for a while. Last week my daughter who is now six has been taken off her block and replace meds as endo feels she has been on it too long (since age 3) and wont do her any good if kept on too long. He said he is highly expecting her to relapse due to the severity of her condition when diagnosed and high volume of antibodies that were present. I have to monitor her for signs of relapse. How long could relapse signs start and will they be severe at first of will it start gradually. She is being retested in 3 weeks and is surgery best over rai at thus age. Any advice would be appreciated.

                Kimberly
                Online Facilitator
                  Post count: 4286

                  Hello – This will vary by patient, but the majority of the time, a relapse will occur during the first 90 days. And for someone with high antibodies, relapse is *extremely* likely.

                  We’re obviously fellow patients here, not doctors, but personally, I would go back to the doctor and ask for the rationale for withdrawing your daughter’s meds now. Surgery is riskier if the patients is hyperthyroid. If that is the path that you feel is right for your daughter, I’m not understanding why they wouldn’t keep her on the meds and schedule surgery while her thyroid levels are normal.

                  Maybe they just want to give this one last chance before proceeding with a surgery that cannot be reversed. But I would ask about the doctor’s plans if your daughter does relapse. Would they put her back on the meds and then wait to do surgery? Keep in mind that side effects with anti-thyroid meds most commonly occur during the first 60-90 days. And if you stop the meds and restart, that period starts over. In other words, if your daughter stops the meds and then starts them again, she is at a much higher risk for side effects.

                  Do you have the option of getting a second opinion? Or maybe you can go ahead and schedule a consultation with a surgeon now to get his/her opinion on the process.

                  wendyh
                    Post count: 16

                    Hi kimberley well it has been just 4 weeks since daughters meds were stopped and already she is relapsing. Doctor told me to restart carbimozale 25mg for two weeks then add levothyroxine at two weeks. I have heard that block and replace is not good for a young child. She is to be retested in 6 weeks then either rai or surgery or stay on meds. They dont seem to know if surgeons or radiotherapist would do anything now or wait til she older. Are the risks of side effects higher second time round. Your opinion would be very much appreciated. Thanks kimberley

                    Kimberly
                    Online Facilitator
                      Post count: 4286

                      Hello – Sorry to hear that your daughter has relapsed. The risk of side effects is highest during the first 90 days of starting *or* re-starting the meds. So you will definitely want to keep an eye out for signs that might indicate issues with the liver (fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, yellowing of the skin or eyes) or white blood cells (sore throat with fever, mouth ulcers).

                      I’m really not familiar with full block & replace being used in children, where the physician prescribes large doses of Anti-Thyroid Drugs to shut down thyroid production completely, plus replacement hormone to normalize thyroid hormone levels. The risk with B&R is that you are using much higher doses of the anti-thyroid meds, which increases the risk of side effects.

                      What is more common in children is prescribing a consistent dose of anti-thyroid meds, and then adding some replacement hormone as needed to prevent hypothyroidism.

                      A second opinion might also be helpful as you make this difficult decision for your daughter.

                      If you haven’t already, definitely check out the videos on the GDATF’s YouTube channel on Graves’ and children:

                      (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

                      GDATF Videos – Check out the ones from Dr. Michael Gottschalk and Dr. Scott Rivkees:

                      https://www.youtube.com/user/GravesAndThyroid/videos

                      GDATF Playlists – Videos from seminar on Graves’ & kids co-hosted by Children’s Hospital of Philadelphia:

                      wendyh
                        Post count: 16

                        Hi Kimberley
                        there seems to be many mixed reviews in the uk about treating children with graves. As you are aware my daughter relapsed when antithyroid drugs were withdrawn and she is back on block and replace. One doctor said to carry on with meds until she sixteen then surgery or rai.

                        the other doctor said it not safe for her to stay on meds as it could cause problems with bone marrow which is non curative. Very confused we have now been referred to a surgeon and radiotherapist to see what the pros and cons are. What do you think. There is not one child in wales at this age so it is very difficult. My husband wants her to try herbal therapy but I am sceptical to this approach as understand it can interfere with absorption of anti thyroid meds and this scares me. If I had the money I would consider

                        taking her to America

                        Kimberly
                        Online Facilitator
                          Post count: 4286

                          Hello – I have never heard of a bone marrow issue with anti-thyroid meds. You might ask to see if there is a specific study that the doctor has seen that I have not. Certainly, though, it’s worth meeting the additional specialists to learn about the pros and cons of RAI and surgery vs. continuing to stay on the medication.

                          I would NOT try any sort of herbal therapy without letting your daughter’s doctor know exactly which supplements she is taking, as there are some that can actually make hyperthyroidism worse. And I would *definitely* not recommend discontinuing the meds and pursing any sort of alternative type of therapy.

                          Wishing you and your family all the best!

                          Kimberly
                          Online Facilitator
                            Post count: 4286

                            Hello – I have never heard of a bone marrow issue with anti-thyroid meds. You might ask to see if there is a specific study that the doctor has seen that I have not. Certainly, though, it’s worth meeting the additional specialists to learn about the pros and cons of RAI and surgery vs. continuing to stay on the medication.

                            I would NOT try any sort of herbal therapy without letting your daughter’s doctor know exactly which supplements she is taking, as there are some that can actually make hyperthyroidism worse. And I would *definitely* not recommend discontinuing the meds and pursing any sort of alternative type of therapy.

                            Wishing you and your family all the best!

                            Ellen_B
                            Moderator
                              Post count: 100

                              Receiving conflicting advice does not make it easy for you to choose the best treatment for your daughter. You need more information on the non-curative bone marrow problems which anti thyroid drugs could cause.
                              Also how urgent is it that you chose for your daughter a definitive treatment of RAI or surgery? It is good that you are at least able to look into those two treatments by speaking to a surgeon and radiologist.
                              There is no evidence that herbs are effective for Graves.’ It definitely should not be a replacement for the standard treatments you are considering. Before you consider giving your daughter herbs you should check with her doctor. The risks for herbs are not known. One of the risks you mentioned might be interference with thyroid meds.
                              Do you need yet another opinion to weigh all three options? It is important that the doctor that is giving you advice is knowledgeable about your daughter—what unique factors need to be considered in her case?
                              My words are just an echo of what others here have already said. I hope at least it helps to reinforce the direction of your research.

                              I wish you the very best.

                              Liz1967
                                Post count: 305

                                Massive plasmacytosis with severe marrow suppression induced by methimazole in Graves’ disease patients: case report and literature review. – PubMed – NCBI

                                http://www.ncbi.nlm.nih.gov/pubmed/25419407

                                Just one study. Methimazole is not a totally innocuous drug. Agranulocytosis is a bone marrow problem that is a known side effect of antithyroid drugs.

                                Ellen_B
                                Moderator
                                  Post count: 100

                                  Hello again,
                                  You already have been told about Dr. Scott Rivkees’ videos
                                  Here is the link to one of his videos
                                  https://www.youtube.com/watch?v=-HttLLtRg7s
                                  — entitled Treatment and monitoring of Childhood Graves’ Disease. What a parent should know.
                                  Rivkees ran the Pediatric Thyroid Center at Yale—the first center of its kind in this country.
                                  If you go to his video you will be able to get on the screen his email address for Yale and for Florida where he is now. Using his email address you could email him your questions and concerns.

                                  Let us know your progress when you can.

                                  I wish you and your family the very best.

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