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?

[GravesLady]

Graves disease is a chronic illness without a true cure. None of the management options for this disorder actually remove the underlying immunologic disorder. Therefore, the prognosis of the disorder is very much dependent upon the form of therapy chosen.
At the end of the course of medical treatment, ATDs, the drugs are withdrawn and the child is observed for recurrent hyperthyroidism. Relapse is more likely in children than in adults, and in those with a low body mass index and a large goitre at presentation.  The remission rate of children in the USA is reported to be 25% after each of repeated two year courses of medical treatment. Relapse generally occurs within the first few months after treatment is withdrawn but can be long delayed. Children in remission from Graves' disease are also at increased risk of becoming hypothyroid in the future, so a case can be made for continued infrequent checks on thyroid function. If relapse occurs, there are three options:  to resume antithyroid drug treatment; ) to proceed to thyroidectomy;  to treat the child with radioiodine.

Antithyroid medical therapy in children and adolescents should never be viewed as trivial. Minor side effects occur in up to 20% of treated children. Serious side effects, including hepatitis and bone marrow suppression leading to patient death, occur rarely, but they do happen.

The potential of worsening eye disease has been reported in a small percentage of adults who have received I-131, this does not appear to be a problem in children, who have less severe eye disease in Graves’ disease than adults. There is also no evidence of increased risk of birth defects in the offspring of individuals treated with I-131 as children.

Surgery is associated with high remission rates, especially if total thyroidectomy is performed . Thyroidectomy is associated with a small risk of hypoparathyroidism and vocal nerve damage . Not typically highlighted when surgical side effects are discussed are the much more common postoperative complaints of neck pain and a lasting neck scar.
Thyroid storm can also occur during surgery, even with adequate preoperative antithyroid drug treatment. There is also a small risk of operative death.

Children rarely develop severe ophthalmopathy.    Thus, eye disease worsens in only a small percentage of children after medical, radioiodine, or surgical therapy of Graves’ disease.
Children and adolescents with thyrotoxicosis are often voracious eaters. When they are treated for their condition, if they continue to eat in the same manner, they often gain weight and begin to struggle with obesity.
Many children with Graves disease self-limit their activity. While they are thyrotoxic, they probably should not compete in stressful competitive sports.
Hyperthyroidism leads to hypercalciuria and loss of bone mineral during childhood and adolescence. In severely thyrotoxic individuals, assessment of bone mineral by dual energy x-ray absorptiometry (DEXA) may be advisable.
Severe school problems because of inattention and restlessness may seriously handicap children.
Thyroid storm is the most severe form of thyrotoxicosis and can be provoked by surgical or medical stress in an undiagnosed thyrotoxic individual.
Other autoimmune disorders can be associated with Graves disease, including diabetes mellitus type 1, Addison disease, vitiligo, alopecia, and lupus.

You might want to check with Mark Lupo, M.D.  at
"The Thyroid Disorder Forum" Medhelp
click on the title  "The Thyroid Disorder Forum" at top of page  or http://www.medhelp.org/forums/thyroid/wwwboard.html
It might take a few days for the doctor to answer, so hang in there and keep checking in.

Below is more info. Hope it helps.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9623516&dopt=Abstract

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=164970

I have a lot more info., like childrens (one who was just 8 yrs old at the time) own stories of their Graves' Disease (and RAI), etc. and thyroid org. but I don't think I am allowed to post their URLs here due to not being gov. related sites.  Anyway good luck to the both of you.

[Beewoman]

Thank you so much for your rapid response.  Will follow your advice and give the best support and treatment to our son. Thanks again.

[myshannon]

Hi there.

My duaghter was diagnosed with Graves in early September.  We were a bit ahead of the "game" because one year ago I found out she was hypo.  We were doing regular 6 month blood checks.  And the one in September came hyper.  She had to have a scan done, and she is now taking PTU and propranolol.  We did take generic Tapizol but she had a SEVER reaction to the meds.  Her body broke out into hives and a rash all over.  As I said she is now taking PTU and I pray that there is no reaction to the meds.

I sit on the computer most night looking for any and all information on Graves.  Unfortunately, not many children have it- so information is limited.  

She is restricted from exercise, and I do monitor her heart rate.  Right now she is 11 pills a day.  OUCH!  I read a book Graves in our own words.  That helps and speaking to others who children have Graves helps.  It helps me to know that there are other people out there going thru the same thing with their child.  

I worry about the long term also.  Especailly her being a female and later in life, I assume, wanting to have children.  Could she pass this onto her child?  She will go thru many hormonal changes in life how will this affet her?  Is she considered to have Graves for the rest of her life?  

I could think about this all day.  I do discuss everything with her. She knows what she has, but can she understand-no.  Neither do I completely.  As I find more information I will let you know.  Any infomation you come across, let me know.  There is a great site called the Graves Foundation.  They have a lot of info also.  

Good luck.  I know how you feel, it is your child.  You want to make sure you are making the right decisions for someone else-your child.

[myEmma]

My 9 year old daughter was just diagnosed with Graves. She has a very severe case of it at the moment. My husband and I have alot to learn about the disease. It was comforting to find this forum and realize others are going through this with young children as well.
Please if there is any advise to help with the symptoms, pass it on to us.
We have not started a treatment today and reviewing the internet I'm not sure what treatment is most effective.
She has lost so much weight and has been very ill for 2 months now. We thought we were dealing with a brain tumor. We just need to get better fast.
Thanks for Listening

[CamilleDu]

My son was 9 when he was diagnosed, but I feel he was hyperthyroid many years before. Looking back at school pictures, I can see a goiter way back when he was 7.

But when his eyes began to bulge, his doctors told us they feared he had neuroblastoma and sent him for CT scans with iodine contrast dyes.

Within days, because of the iodine, his throat swelled up big and I used Google to search for "goiter" and "eye" and discovered he had Graves. I took him to an endo and confirmed it.

They put him on a lower dose of Tapazole (10mg) than I see most kids get put on. (Most kids don't need the big doses).  In just 8 weeks, his T4 and T3 were back down to normal. His docs quickly cut him back to 5mg for a few months, and then added some synthetic hormone to maintain good T4 levels - never allowing the T4 to drop below normal range.

Here's a BIG mistake doctors make at this point: THEY PAY ATTENTION TO THE TSH -- but it is well known (see thyroidmanager.org, written by top endos) that TSH can remain suppressed for months or even years! Long after the hormones have normalized!  So by forcing the TSH to move, the patient is sent VERY hypo and often ends up with hives, injured liver, et al.

My son stayed on 5mg Tapazole with 25mcg Synthroid for 3 years and his hormone levels remained PERFECTLY STABLE through the entire process. He only had to take the Tap once per day and get blood draws only four times per year. His Graves antibodies (TSI) slowly began lowering....each year they were less and less.

At 3.5 years, the TSI antibodies finally registered "NEGATIVE" and he stopped Tapazole at age 12.

He's is now 14 and has been in remission for 22 months. He made straight A's all through middle school (3 years) and was placed on the Honor Wall.

But best of all, his eyes are completely normal again and his goiter is much smaller than before.

Now here's what is surprising to me -- when I asked, my son's endo says they have an 80% remission rate using this therapy.

So why do so many websites say 25% in remission is all that is possible on ATD therapy?  Is it really the disease, or is it the way the disease is being treated that causes such a discrepancy in remission rates?

[lottsofcritters]

I am so glad to find this thread!  My 4 year old daughter was just diagnosed with Graves Disease.  She has probably had it for at least 6 months.  We have started her on the medication, and hopefully it will help.  Her hyperthyroidism is mild now.  I requested the thyroid test due to concerns about her energy/appetite/sleep.  She is starting school next year and I knew it was not ADHD!  

Any information or input is appreciated as this really does appear to be unchartered territory!

Thanks!
Sheri!

[lynn37]

My son is 14 years old he was diagnosed with bipolar/ADHD 3 years ago. Recently his anxiety became elevated so we put him on buspar. I saw a difference right away. All his behaviors got better.  So I started to question could this be anxiety alone and not bipolar. Then he gets his blood drawn his thyroid came back as overactive. This made me really think could it be his thyroid alone. He has always been a very skinny child and very hyperactive. I called his doctor and before he was put on his bipolar/ADHD meds  (depakote,Strattera and Ritalin) we did have his blood drawn and his thyroid came back normal 3 years ago but now it is overactive. He has his blood drawn every 6 months this is the first time this has come up. His doctor said that sometimes thyroid problems  just don't show up right away. He is going to be seeing an endocronologist soon. Has anyone out there gone through there child having bipolar/adhd symptoms and it turned out to be overactive thyroid.  Thank for any help Lynda

[lottsofcritters]

Yes! I requested the thyroid test because I know my daughters energy level is higher than most kids!  She is starting school in the fall and I wanted to make sure there was not a medical reason for it (I knew it wasn't ADHD, but I also knew that in a classroom it would look an awful lot like it!)...  I also joke that I have a 'bipolar baby'...  Just in that she will change moods quickly...  usually, just that she gets over things easily...  may get upset some, but them moves on and is happy as ever.  Good luck!

[mommieof3gr]

my daughter just turned 6 yrs old, and was diagnosed with Graves only 1 week after her birthday. she has been undergoing test for over a year now for her symptoms. She also suffers from mirgrane headaches. These are controlled now. She has also has had a rapid heart beat from as long as I can remenber. Just in the past year it became severe enough that the Dr's were concern she has high blood pressure taken (atenelol). Now looking back we have notice her eye changes, she wears glasses. Her eyes are getting worse, dark circles, puffy, and they drain Her eyes are open a little bit while she sleeps. She takes, (Zyrtec) for allergies She also has reflux, she takes (Zantec) for that ,lately she has been having really bad stomache pains? Not sure why? Stared the (methimazole) just a week ago. I am glad to find some where to go and hear that other parents are going through the same as we are. She is in K-5 and not making much progress, she has missed several days of school for med. reasons. I struggle every day sending her to school. She only feels good one to two days a week. We "live" in the nurses office. I don't also go pick her up I try to make her stay at school as much as possible. Any advise or suggestions, worried mom HELP!

[Traceymomof3]

my 11 yr old daughter was diagnosed with graves on sept 10 which she has probably had since age 6 or 7 and no one ever thought to test her thyroid we have been to pediatric cardiologists er's and pediatrcians family doctors no one caught it and now they have her tsh levels in check with a huge find as of friday her tsi level which is supposed to be under 129 was on sept 10th 246 is now over 400 and her pediatrician is back on telephone with birmingham endo trying to find out why her thyroid is twise the last size and her levels have doubled in just 4 weeks. if anyone knows anything please let this worried momma know. thanks and you are all in my prayers