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in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179988

Kimberly and Shirley,I do agree with you both on certain parts of Shomon’s book. I knew going in that she is not an M.D., and I only skimmed through the chapters on alternative treatment because I don’t feel there is a way to “cure” a thyroid condition through diet.

I only recommend her book for the information given about symptoms, what certain tests are for and because i found the information given from a patient perspective to be helpful in understanding what was happening with my son.

While I think that it is a good place to start when you are looking for information to discuss with your endo, I would never suggest someone try to use the book as a way to treat their thryoid condition without the supervision of a Doctor. Right after my son was diagnosed with Grave’s I bought the book and tagged a number of pages to take with to our first few appointments so that I could ask questions. It helped me to better understand what the endo was telling us, and was a good tool for putting together a list of questions.

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in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179983

Kim,

My son Jack was diagnosed in September last year just days after his 6th birthday. He has almost the exact symptoms, but without the eye and heart problems. His behavior was awful and was the worst at school. I know exactly how you feel because even though you try to explain to everyone what is going on they just can’t understand what it’s like raising a child with grave’s disease.
You’re right, it is hard to find information on graves in kids, but hopefully you have a good pediatric endo that will be able to tell you everything you need to know. I read everything I could find on thyroid disorders both online and in books. One of the best books I have is “Living Well with Grave’s Disease and Hyperthyroidism” by Mary J. Shomon. She does a great job of putting together a lot of helpful information.
There will be days where you feel like you just can’t take it anymore because his activity level will drain you completely, and you just don’t think you can handle one more tantrum over something as simple as being out of his favorite snack. Just remind yourself that he’s not doing this on purpose and he can’t help himself. He needs you to help him and give him all the love and support he can handle to make it through this.
My son will be having a complete thyroidectomy next month because we are not able to treat him with medication. Hopefully you are able to just do medication and your son will go into remission in a few months. If you have any questions or just want to vent let me know.

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in reply to: Methimazole stopped working #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.

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in reply to: Methimazole stopped working #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.

[ricatca]

in reply to: 6 Year old son with Graves Disease #1175163

Thanks Kimberly,

I actually watched Dr. Rivkees’ video on the stress of raising a child with Graves before posting here and I literally cried the entire 39 minutes of the video because I can identify my sons struggle in everything discussed.

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