Child with Graves disease, long term effects

[Beewoman]

My 7 year old son has just been diagnosed with hyperthroidism, Graves disease.  As it is so rare in children, it was misdiagnosed for some time and his levels were TS3 of 1,000!  This has come down to 343, after treatment of PTU (300mg/day) and Atenonol (50mg/day).  His symptomes were severe but he is slowly getting better.  What are the long term effects of this disease on a young child?

[Mom911x3]

Do you have a Children's Hospital near you? If so demand that you be sent there, even if it is a ways to drive, it is ery much worth it.  My daughter was diagnosed jus before her second birthday and had been showing signs since abot 6months of age.  I finally diagnosed her myself and her doc told me that no children that age have thyroid problems.  Right! Anyway my daught is now 9 1/2 and doing very well, we have ad mny bumps along the way but you have to be forceful in your demands. Doctor's don't alwas know what is right with your child, the only see them for a few minutes every few months. You know your child, and you know if something sn't right with her.  For the first year and a half or so we were seen every 3 - 4 weeks, levels changes frequently at that age because they are growing so fast.  Your daughter will be fine but youhave to be assertive with the doctors, if need be.  

[mossfam]

my name is Montoya and I just found out a week ago that my daughter has Graves disease she's only 3 years old I am so lost for words I don't know anything about this I just need help I picked up on the signs my daughter pediatrician told me that she was just eating a lot in going to the bathroom because she was getting her appetite back from having surgery getting her adenoids in tonsils remove she is now taking methimazole 5mg in atenolol 25 mg she is also losing her hair

[MommaGravesLilOne]

My daughter was diagonosed in Sept 2012 with Graves.  She is 4 yrs old.  She had a thyroidectomy and is on Levo now. Can you tell me what her flare up symptoms are?  My daughter is having so many issues.  Mostly inflamation in her joints.  She tested positive for another antibody suggesting another autoimmune disorder on top of Graves.  I feel so overwhelmed.  Waiting and waiting to get in with a pediatric rheumatologist.  This is so hard watching her suffer.  Her mood swings are unbearable.

[Rere66]

Are there any support groups for parent's with children with Graves Disease?  I would love to be able to speak with other parent's.  The doctor's do not listen and it is very frustrating.  Everytime my daughter's symptoms flare up the endocrinologist gets bloodwork done and tells me her levels are normal.  Well I have to say that the doctor does not have to watch my child feel horrible most of the time.  Her the normal is not the     normal.  She had the radiation done in 2008 and did very well for about 3 years and now everything seems like it is back to square one, but the docs are telling me it is not her thyroid.  She has been on levothyroxine since the radiation therapy.  I really believe that most of the symptoms she is having are being caused by the disease, but the docs don't think that is the problem.  And to top it off, we lost our insurance, so no one wants to listen to my daughter or me.  She has become very upset because she said that the doctors don't believe her.  This is not the way I wanted my 16 year old to feel at this stage of her life.

[Rere66]

My daughter was diagnosed with Graves Disease at age 8.  I definitely know where you are coming from.  Make sure that you get her on what we in NJ call the 504 Plan.  It is the children with disabilities act.  I did this right away when I found out what we where dealing with.  This plan makes it so that she will be able to have more time on taking tests, they can also have her take tests out of the classroom so she can concentrate better.  I set up a plan with the school so that my daughter could use the bathroom whenever she needed, if she needed to eat she would go to the nurse's office for a snack.  If she got overheated, she went straight to an air conditioned room.  The plan is based on each child's needs.  Please check it out with your school.  It will put you and your child at ease at least with school.  It is an uphill battle and I wish you luck.  My daughter is 16 now and we are still battling this horrible disease.

[Sabrina78]

My 4 year old was diagnosed with Graves’ disease about 5 months only because for the last 6 months she had high blood pressure readings.  We played the watch and wait and changing of diet. Nothing seems to help her blood pressure stayed around 138/71 and pulse was 120 at resting.  We were sent to the Cardiologist, Renal Specialist all test came back fine. THANK YOU LORD!  It wasn't until I continue to research and started to notice my daughter protiduing eyes, increased thirst/appetite.  I brought it to the dr. attention and they conduct full blood work. All thyroid levels are off the chart.  We were immediately sent to an Endocrinologist.  Where the did more test to confirm the diagnose. The two tests confirmed the antibodies were attacking themselves she has been placed on BP meds and thyroid.  It's so hard sometimes I cry but, I remember things could be must worst. I think God it wasn't her heart, kidneys, etc. and Hyperthyroid can be managed.  But, it's so hard to see her getting stick with a needle every 2-3 months.   I constantly watch her sleep and just pray to God we go into remission soon. I know God is a healer and believe he will heal her. I have started to watch her diet and offer a lot of organic foods and decrease a lot of processed food.   I would like to hear from other who have cope with this disease.  Thanks! Sabrina