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Thyroid Disorders Community
This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, pituitary gland, cancers, thyroiditis, and thyroid Stimulating Hormone (TSH).
Child with Graves disease, long term effects
by The Indian, Oct 20, 2006 12:00AM
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?
At the end of the course of medical treatment, ATDs, the drugs are withdrawn and the child is observed for recurrent hyperthyroidism.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 Relapse generally occurs within the first few months after treatment is withdrawn but can be long delayed.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.
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.
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
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