Viewing 15 posts - 1 through 15 (of 31 total)
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  • wendyh
      Post count: 16

      Hi I recently told you about my daughter with graves. Her levels still havent reached normal levels after 13 weeks of medication. They are going up and down. Her left side of her heart is enlarged and this is worrying me greatly.

      Does anyone know if she is able to have her second mmr vaccine as she is due for this. There is a measles epidemic here in wales at the moment and noone seems to know if it is safe for her to have this vacination. Please help.

      snelsen
        Post count: 1909

        The only person to answer this is your pediatrician.

        I grew up beforemeasles vaccine, and measles can be dangerous. The fact that there is a measles epidemic in your area, means that not enough parents have had their children get MMR, thus the epidemic.
        On Monday, I’d call her doctor, (or the doctor who knows about her) say to the voice that answers
        you MUST get the answer to the question. I think you will be advised to get the vaccine for her.
        Another option is to simply take her to the doctors office, tell them you are here for her vaccination, but tell them you want to check with the doctor first.
        YOur questions:
        1. OK to have the vaccination because she has Graves?
        2. Does the fact she has an enlarged heart make a difference one way or the other?

        I suspect the answers will be YES to #1, and for #2, NO
        and probably the Conclusion, especially with the measles epidemic, that it is critical that she should get it.

        I am just a Graves’ person, and medical advice can’t be given on this forum, as it should never be given by anyone who is not a physician, who knows your daughter. But I encourage you to definitely make it a priority to
        get the answer to this question on Monday, and I hope this is possible for you to do.

        If you have not checked already, you might appreciate the information Kimberly has provided in the past, for parents with kids with Graves;.

        If you would like read a reliable source about measles, here is the American site, called the CDC, or Center for Communicable Disease.
        http://www.cdc.gov/measles/vaccination.html
        shirley

        Kimberly
        Online Facilitator
          Post count: 4290

          Hello – As Shirley said, your daughter’s pediatrician is the best source of information as you make this decision.

          Here is some general info from the Mayo Clinic on vaccines:

          (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).

          http://www.mayoclinic.com/health/drug-information/DR602969/DSECTION=precautions-

          The Mayo site doesn’t mention this, but I’ve heard that the primary concern with vaccines is the *live* form of vaccine. I’m not familiar with the measles vaccine, but this would definitely be an issue to discuss with your daughter’s pediatrician so that he/she can point you in the right direction.

          Take care!

          snelsen
            Post count: 1909

            Measles is a live vaccine. NecessAry for immunity
            Do follow up with the pediatrician. Measles is a scary disease and you are in the middle of an epidemic. You should Also be sure you are fully immunized so you do not get measles And expose your child or anyone else

            wendyh
              Post count: 16

              Hi everyone

              My daughters cabimozale has increased to 20mg now. Her last readings are tsh 0.03, t3 34, t4 23.3. Are these results good or bad. Her goiter seems to be a bit bigger and her heart rate has increased. She is seeing an endocrinologist tuesday so I hoping he will do something to help her

              Kimberly
              Online Facilitator
                Post count: 4290

                Hello – We’re fellow patients here, not doctors, so we’re not allowed to interpret lab results. I would encourage you to get a hard copy of all your daughter’s labs, so you can see where her levels are compared to the lab’s “normal” reference ranges – and keep track of them over time. Different labs can use different “normal” ranges, so the actual numbers are only useful in the context of your specific lab’s range. Are your daughter’s levels right in the middle? At the upper end? The lower end? And where is she compared to her last set of labs? This is the kind of information that can be useful over time. In general, for a patient who is hyperthyroid, you want to see T3 and T4 decreasing towards the normal range and TSH increasing towards the normal range. (Although the TSH can take longer to respond than the T3/T4).

                Since she will be seeing an endo on Tuesday, it will be really helpful to document all the symptoms that you mentioned (goiter, heart rate) and make sure the doctor is aware of this. This will give the doctor the best information possible in making a decision on further dosing adjustments.

                Wishing you and your daughter all the best!

                wendyh
                  Post count: 16

                  Hi kimberley

                  Thanks for your reply. I saw the endocrinologist and because who levels havent improved to what they would expect he has increased her meds to 25mg for a month. He states that if nothing has changed he recommends rai treatment. I dont know anything about this as it has not been done in the uk before.

                  I worry as heart rate not decreasing and propanalol is not helping. Can you give me any advice on what to expect should this be the only way forward.

                  Many thanks

                  A worried mam

                  snelsen
                    Post count: 1909

                    Questions and thoughts for you..
                    did you use the search engine, up in the upper right hand corner, to see posts from parents of Graves’ children?
                    I briefly did, there is a post from ricata that I think you might appreciate reading.

                    I know you are in the UK. I think your endo did the right thing by increasing the meds. I, too would be concerned that her heard rate is still high, and probably it will come down with the increased dose, that is the purpose of the increase.

                    Are you seeing a PEDIATRIC endo? If this is possible, I sure do encourage this.
                    Any chance of this? Docs who treat adults are not familiar with kids, and generally, they have to look up child doses in a reference. Or does your child have a pediatrician? Who will know kids, but probably not Graves’/

                    I THINK I am correct in knowing that surgery is the recommended choice for children with Graves’. Of course it should be a surgeon who does thyroidectomies on a regular basis. Do you feel comfortable asking her endo why he/she recommends RAI?

                    I am hoping you see improvement with the increased dose. Is her endo checking liver function labs along with thyroid labs, do you know if this is happening?

                    Here is a reliable reference for you to read. I think you really need to have more consults for the best treatment for your child. There are lots of compelling studies that say surgery is the way to go. You need to speak to a pediatric endocrinologist, I think . Although there is also disagreement.
                    Shirley

                    http://jcem.endojournals.org/content/92/3/801.full

                    npatterson
                    Moderator
                      Post count: 398

                      Have you been in touch with the British Thyroid Foundation there in the UK? Not to imply that you should not be here, too, but they are right in your own back yard, so to speak. They are a patient organization like us, but they really klnow their stuff.

                      Take care,

                      Nancy

                      snelsen
                        Post count: 1909

                        WEndy, I check the British THyroid site. The first thing I saw, was a video on children with thyroid issues, made for the children. I think your daughter might like it. and adults will learn, too.
                        Shirley

                        Kimberly
                        Online Facilitator
                          Post count: 4290

                          Hello – Yes, I would also suggest visiting the British Thyroid Foundation site:

                          (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).

                          http://www.btf-thyroid.org/

                          Here in the U.S., the preference is to *not* do RAI on children under 5 years of age who do not respond to anti-thyroid drugs; instead, surgery (performed by an experienced surgeon who does a lot of these procedures) is preferred. However, we are fellow patients, not doctors, and there might be other circumstances that are causing your daughters physician to recommend this treatment option.

                          wendyh
                            Post count: 16

                            Hi kimberley

                            Just wanted to update you on my daughter. She was put on 30mg cabimozale for three months but this ceased to work. The endocrinologist has gone one step further and wants me to increase the dose to 35mg in divided doses for a month and if still jo joy put it up to 40mg for a month to see if this stabilises her vondition. I am very worried as it is over the maximum dose recommended and what side effects could it cause.

                            The deadline is december and he said that rai would be next option but we need yo speak to a radiotherapist first. Very worried as she is very uoung to undergo this and noone seems to know what the risks involved are long term. Surgery is also an option if performed by an expert hut still that carries risks also. In such a dilemma as why do some doctors say rai and others say surgery is better taking in to account she only 3 years old.

                            snelsen
                              Post count: 1909

                              Hi, everything that I have read, and heard presented in meetings, says that RAI is not the right choice for children. And that surgery, a thyroidectomy, is the right choice.

                              As you clearly know, we are not doctors here, but I would try very hard to ask that you have a consult with a thyroid surgeon, and that you take her to a children’s hospital. Caregivers in regular hospitals that care for adults, are not at all familiar with care for children. Can you make this happen?

                              AND
                              I suggest you be very proactive with your endocrinologist (remember, you are concerned about the welfare and safety of your daughter, not if he will be made at you, or seem defensive. Ask him:
                              1. you want to explore surgery at a children’s hospital
                              2. you are concerned about the higher doses he proposes, for what you have learned, is those are too high a level of medication for a 3 year old. Can you do any of this?
                              Shirley

                              Raspberry
                                Post count: 273

                                Wendy I am so sorry for your little one and you to be going through this! GD is hard enough on an adult who knows what is going on. I don’t know much about the UK health system, but is there any way you can get a second opinion – or have you already gotten one? That much methimazole would totally block the thyroid of an adult. It seems like something odd is happening here to keep the drug from getting into her system.

                                wendyh
                                  Post count: 16

                                  Hi it has been a while since I updated you on my daughter who is now 4 years old. She is on block and replace now 30mg carbimozale and 25mcg levothyroxine. Her levels seemed ok 5 weeks ago but lately her appetite has increased again plus she has lost 6lbs in weight. She has become very hyper again and sweaty. She saw a thyroid eye disease specialist who want her to have a mri scan as something wasnt right with her eyes. It may be retina damage or something pressing on the optic nerve. Is it safe for a little one to have general anesthetic with graves disease. The endo said they have to try and get her to 8 or ten yearsold when she will have to have rai or surgery. Is there anyone who can advise me I am concerned of the safety of having general anesthetic with her condition. Many thanks

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