Pediatric Graves' Disease

[Crown1717]

My 4 yr old son was diagnosed with Graves' disease in Sep 07.  PTU and Atenolol were started immediately.  He has responded to both medications (Atenolol was discontinued in Dec 07).  However, TSH levels are still below normal level.  T3/T4 have been within normal range since Jan 08 but are fluctuating with dosage changes.  My son complains of joint, shin and back pain periodically.  He has excessive height compared to kids his age (4 inches above 100th percentile for his age).  In addition, he has an expressive language delay that has required speech therapy since 18 months of age.  His mother had total thyrodectomy at 17 yoa due to thyroid cancer.  Maternal grandmother has hypothyroidism.  My questions are below.
1)  Due to family history, should we consider thyroidectomy?  If so, at what age?
2)  What tests should we consider to identify the source of joint, shins and back pain.
3)  Should we request an orbital tomography scan to set baseline for GO diagnosis?
4)  Our pediatric endo has very limited experience with GD.  Can you recommend an experienced pediatric endo in TX for a second opinion.

Thanks in advance for your time and consideration.  Any additional thoughts or suggestions would be greatly appreciated.

[Dibs42]

My daughter was diagnosed with Graves on June 4th.  She is 6.  Luckily, I'm a teacher and have been able to stay at home with her the past couple of months to get this under control.  I feel like our lives have been turned upside down.  We started out with a sore throat and a diagnosis from an ENT of Thyroiditis......We ended up seeing a pediatric endocrinologist in an emergency visit because of her heart rate.  We've been on methimazole since.  We started on Atenolol but it wasn't helping enough.  We are now on Propranolol 4 times a day.  End of June we were told we were going to be doing RAI because the doctor feared congestive heart failure.  Our last visit finally showed that her levels were decreasing and we're giving the methimazole a little more time.(I too am scared to death of RAI.)  Surgery is out of the question because of her age.  We start school in a few weeks and that scares me.  As far as symptoms and side effects, every day is a new day.  I never know what to expect.  Now that the levels are coming down, I feel like I'm seeing my daughter again.  Makes me sad when she's having a bad day.  Just thought I'd send a note to let you know that you're not alone.

[lottsofcritters]

My 4 yo daughter was just diagnosed with Grave's Disease which was a surprise to us as there is no known family history of it.  There are however family members whose history is limited.  I have been researching thyroid problems in young children ever since her first thyroid test came back abnormal.  We are in NC and fortunately have been referred to a great pediatric Endo at Duke.  I have seen mention of Pediatric Endo at Texas Childrens Hospital (not sure how far that is for you).  We will be starting medication as soon as our local pharmacy can get it in.  I hope she responds well.  I have been looking into the possibility of Thyroidectomy or Radioiodine Treatment if indicated.  Honestly, from my perspective, I hope to be able to postpone a thyroidectomy as it appears to be extremely difficult to find surgeons that can perfom the surgery on someone so young.  And frankly, the Radioiodine treatment flat out scares me.  I will see if I can find any resources for the Texas area.  I also hope you have been able to access the pediatric endo forum on this site.  It has been very helpful and she responds promptly.  Good luck!  I do not believe there are many parents of children so young with Graves Disease...
Sheri!

[skymax2000]

You should probably post this in the doctor's forum. Good luck. Keep copies of all your test results.