[ricatca]

#1059516

Has any one had the experience of Methimazole not working? We took my son for this month’s labs on Saturday and his Endo was on the phone with us first thing Monday morning telling us that his meds have stopped working. There was absolutely no change in his levels since his labs in October. My son just started taking Methimazole in Sept and at first it worked and we saw symptom improvement, and now he’s getting worse again.
We had to raise his dose from 20mg to 25mg and it’s kind of nerve racking since last time we were in the Endo’s office he told us that raising meds higher than 20mg for a 6 year old made HIM nervous!

[Khadijah]

#1175303

This is heartbreaking, I am terribly sorry. I think you may need to talk to another doctor as well, just for peace of mind. Where do you live? I’ll ask my endo (he does lots of research) who he thinks is the best doctor for children. Maybe at least you can do a phone consult?

Have you discussed other options, I would imagine obviously on a six year old precautions would have to be made.

But, my first thought is that if there is no toxicity maybe a higher dose for a while will help.

I’m praying for you and your son.

[Kimberly]

#1175304

Hello – Wow, I’m sorry to hear that your son isn’t seeing any relief. Keep in mind that dosing with methimazole is part art, part science — the dose might need to be tweaked multiple times to find the patient’s own “sweet spot”.

The latest medical guidance from the American Thyroid Association and American Association of Clinical Endocrinologists notes some general dosing guidelines for the use of methimazole in children, but states that higher doses can be used in the event of severe hyperthyroidism. You can find this guidance in the “Treatment Options” thread in the announcements section of the forum. The section on children & Graves’ starts on page 612-613. This document might be a good starting point for a discussion with your doctor on next steps.

Take care!

[Carito71]

#1175305

ricatca,

I personally haven’t had that experience. Methimazole has worked for me. I have also never read anyone say that it did not lower their thyroid levels. My only suggestion is asking the Dr. if there is anything else you can do to help the medication work better. Maybe taking it with food or without food? I’ve read that certain foods can increase thyroid production. I’m sorry I can’t be of much help. I hope your son starts to get well soon and that the adjustment in medication helps him feel better.

Caro

[ricatca]

#1175306

Thanks everyone! I had to call the endo this morning because we have a very, very hyperactive child on our hands right now. There has to be something else we can do. His energy level has gone through the roof and he’s been having even more awful emotional outbursts. I’ve already been on the phone with his school twice today about his behavior, once with the Vice Principal and once with the school nurse.

I read the dosage guideline in the treatment options thread and he’s on a dose that is way higher than the typical amount for his age group so I hope he starts to respond soon so he can get some relief. It’s so hard to see him struggle like this.

[Carito71]

#1175307

ricatca,

It is sad to know that your little son is going through so much. It is hard on an adult, I can only imagine how much harder it is on a child. I hope with all of my heart that the Dr. can find a better way to help him.

[wendyh]

#1175308

Hello

I am going through the same thing with my 3 year old daughter. The endo has now put her on 30mg of carbimozale which is a very high dose. She has a goiter which seems to be increasing in size and a rapid heartbeat which should be under control with propanalol but this not working either. They are retesting in 4 weeks so I am hoping we will see a chane because I knoe rai treatment is getting closer which I am very nervous about.

Yes fery hyper behaviour with poor concentration span. It is very hard to watch your little ones go through this . What is the latest with your son and have your endo mentioned rai treatment.

Take care for now and you are certainly not alone.

[snelsen]

#1175309

To ricatca-I am glad wendy wrote, for it is supportive to be able to “talk” with a parent of another Grave’s child.

I think I recall that Kimberly mentioned there was a GDATF site, Facebook maybe, for parents of children with Graves’
I do not know what options you have, and I am sure that there would be a long wait to see this kind of a doc, but I do suggest a pediatric endocrinologist for both of you.

To Wendy-I encourage you to ask the doctor who is treating your little girl the pros and cons of RAI on a young child. I think treating a child with Graves’ is very challenging. But my understanding from talking to a physician who has a daughter with Graves’ at the last GDATF conference in San Diego, and from what I have read, is that surgery is a much preferred option for children. Done by a pediatric surgeon or course, preferably at a large children’s hospitals. It is at least worth a thoughtful discussion with the experts in the field, so you clearly understand the doctor’s rationale and reasoning for recommending RAI for your daughter. And you should learn the cons of this decision.

To ricatca-I am so so sorry about you son. It is painful, and very difficult for everyone, to deal with the behavioral issues with a child. Six years old is SO LITTLE! Of course Wendy’s girl is only three. All of it is hard, hard for all.

On the good side, it does sound like the endo for you son is paying a lot of attention to his situation, and have his doctor concerned and involved in his care, is encouraging.
I think it is probably safe to say that Graves’ in children is rare enough, that there are not many experts or resources in the field.
Questions for you-any other options for med?
-when does he want labs again?
-Tell him you realize that childhood Graves’ is rare, and you are worried (as he is) about all of this. Of course I am not a doctor, but a month seems a long time.
-ask him if there are any resources internationally that he could consult with regarding your son.

To both of you. My heart aches for you. I have two special needs grandsons, one on the autism spectrum, the other with a whole bunch stuff. We are not sure if either of them will be independent and functional and happy adults.
Shirley

[Kimberly]

#1175310

@Wendyh – This is the Facebook group that Shirley mentioned:

(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).

https://www.facebook.com/groups/265484340175004/

This is *not* an official group moderated or controlled by the Graves’ Disease and Thyroid Foundation, but it includes many family members who have come together to share their personal experiences. It’s a closed group, but you can request to join, and the organizers will approve you if you let them know that you are a Graves’ parent.

Definitely ask LOTS of questions before proceeding with RAI. I’m guessing you are overseas (since Methimazole is the drug that is available in the U.S.). However, in the U.S., RAI is generally NOT done on children under 5 years of age. I hope that your daughter sees some improvement when you retest.

@Shirley – Wishing you and your grandbabies all the best!

[ricatca]

#1175311

I’ve been away for a while, but I wanted to give a quick update. After repeated attempts to lower the methimazole dosage to see if my son was going to go into remission we have reached the end of the road. His Graves is not manageable through meds so just this week we met with a surgeon to schedule a total thyroidectomy in July.
Wendy, RAI was not an option for us and it was not an option his endo would have given us because he is so young. The risks of running into leukemia later in life were too high for either of us to even consider the treatment. From everything I’ve read it seems to be that if meds can’t manage the situation the only good option for small children is surgery.
On one hand now that surgery is scheduled there is a sense of relief, but on the other it’s so hard to deal with the fact that your child has to have part of his body removed at only 6 years old. He’s being such a champ about the whole situation and we have been open and honest about everything that is going on. We answer all of his questions, I’ve shown him pictures of what a thyroid looks like in my anatomy text books(he actually refers to it as his butterfly), and we encouraged him to ask the surgeon every single question that he had. That was entertaining because he got into a discussion with the surgeon about the Magic School Bus and what the job of antibodies are! I’ll post more as we get closer to surgery and after.

[Kimberly]

#1175312

Hello – I know this is a difficult enough decision to make for *ourselves*, much less a small child! But I think there is still a sense of relief in looking at all the options and then making a final decision. The link that was posted above for the Facebook group includes many parents whose children have been treated with thyroidectomy, so that would be a great resource as your son prepares for surgery.

Wishing you and your family all the best!

[Author]

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