Please Help! 6 Year Old Son With Graves Disease

[bmxdad]

Dr. Lupo,

My 6 yr old son was diagnosed two years ago with Graves.  He has been seeing an endo every 3 months since. then.  He was taking Methimazole until a week ago, when he started to have an allergic reaction (Hives).  His primary endo and peadtrician both believe he should undergo RA131 for his Graves to control it.  Both of them are strongley against him having surgery.  I decided to get another opinion, so we went to Childrens Memorial Hospital in Chicago (My home town).  The "New" endo said surgery is the best option and that the RAI131 risks are too great?  I had an complete Thyroidectomy a year ago for suspected cancer, and I had no issues with the procedure....By the way, No Cancer :)  So now I am VERY VERY scared and confussed.....My son will be getting the Hyper side effects within a week or so, so I am trying to make a solid decision of what to do.  Based on the info I have given and your experience, what would you recommend and why?  How risky is RAI131 vs. surgery?

PLEASE HELP!
BMXDAD

[bmxdad]

I just want to thank you for answering my questions and giving my your opinion(s).  My son has his TT on August 20th, and he is doing GREAT!  It is so nice to have all of this behind us.

Good Luck To All,
Karl (BMXDAD)_

[Mark Lupo, M.D.]

Yale Medical school also has a lot of experience with pediatric thyroid surgery - if you need a second opinion, that may be an option.

[bmxdad]

Thank you for taking the time to not only answer my question(s), but to re-post more infomation.  I have decided to have my son go through with surgery.....I / we are going to Childrens Memorial Hospital in Chicago to have the proceedure.  I / we are meeting with the surgeon tomorrow (08-14-10) to discuss everything.  If I do not get a good vibe I will not go through with it.  However, to me, I believe that if he has a sucessful surgery that we will avoid the ups and downs with the meds for the next several months, reduce the possibility of him getting TED, and avoid all of the unknows of RAI131.  I just hope and pray I am making the right choice.  It was so much easier for me to make that choice for myself last year.....However, if something goes wrong, I will blame myself for the rest of my life.  The choice I make today is going to be what my son has to live with.  That is the hardest part!

Thanks Again,
Karl (BMXDAD)

[Mark Lupo, M.D.]

Newer (unreleased) guidelines for children older than 5 who are not controlled with methimazole will suggest RAI over surgery.  If surgery, then must use a highly skilled pediatric surgeon.  Generally lack of control after 2 years leads to consideration or RAI or surgery.

[GhOsTeGrL]

I’m 33 year old female with Graves disease  I was told graves disease has caused my hyper active thyroid. What is Graves disease? Also, I’m taking meds for my thyroid but they don’t seem to work very often. I take two 25 mg of Atenolol  a day and 2 50 mg Propylthiouracil twice a day and still don’t feel comfortable. Walking up stairs to my parents apt. makes me feel so exhausted that’s how bad it is. I feel like I'm going to die. I get really bad chect pain after an episode  of rapid heat rate.  What can I do to feel more comfortable?

[Mark Lupo, M.D.]

I don't treat children, so my experience is limited.  However surgery is a good alternative if there is an expert thyroid surgeon available.  Radiation at this age may have unknown future consequences - that is the main concern.  Re-challenging with methimazole to see if hives recur may be another option given that he did well on it for 2 years, but given that he needed it for two years, suggests low probability of remission with methimazole.