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?

[gimel]

Sounds ridiculous to me to allow her to continue to be miserable.  The antibodies won't kill off her thyroid for an extended period, like in years.  How does the doctor know she has Graves'?  Was a TSI test done?  Also what were the actual results of her tests, along with reference ranges shown on the lab report/  

[Mom1toughgirl]

Our daughter  is 10 and they found lumps on her thyroid did lab work and found she was postive for tpo antibodies. After months of one doctor doing nothing we went to a different  doctor  who sent us to a pediatric  endocrinologist who then sent us to Children's Hospital for a biopsy  and more lab work which came out noncancerous but both antibodies are postive and high but her th levels are normal so he said even though she has Graves disease  he can't put her on any medicine  until her body kills her thyroid. She has hand tremors, brittle thin hair, migraines, memory loss, always tired and with exercise she is very exhausted and starts feeling sick, mood swings, irritability and eating  a lot but losing weight. The only thing he says is we will  recheck in 6 month and her levels are constantly changing so she will  continue to feel like this and she has worse days ahead but can't give us any help and doesn't  explain this disease  and what we need to watch for. He hasn't seen our daughter but the one time. Anyone have any advice?

[lovemyspaniel]

following your post....My daughter too was just diagnosed with Graves last Sept 2014 and she is just 11.  We have been up and down with her levels but her TSI antibodies are really high so now the disease is attacking her eyes.  I have researched a ton and have read that radiation and removal of thyroid do not stop the disease from attacking the eyes.  There is a specialist eye center here in San Diego that I have a call into because I want to make sure we are doing everything we can.  She is in the inflammation stage of the eye disease right now.  Have you tried acupuncture?  I have a friend who developed Graves later in life and she had success with the eye pressure she also went to a totally clean diet.  (Which is very hard for a picky eater child) I have heard over and over that Selenium is a good way to go but also to be careful because she is a child so she does not take extra selenium .   But  I did just start increasing her Vit D levels and add Flax Seed to her meals and smoothies when I can.  

[gravesmominbelgium]

Hello to all!
We live in Belgium and our son was diagnosed wth Graves Disease in January 2014, he was 7 years old at the time -- I can really relate to the previous posts: guilt at having not seen it  in time, at ranting and raving at the lack of focus, at worrying about his volatile moods, irritabilility--all of which was just the other side of "normal" for a 7-year old boy. Long story short: we caught it, his blood test results were like 1/20th of the normal rate of 60 X the normal rates.  We were lucky to get fast  and initially very effective treatment at the pediadric endocrinology department of  our local University hospital.

The good news for all those worried parents out there: within WEEKS we had our happy kid back.

The way the disease is managed in Europe seems pretty different in Europe than in the States. Here, the basic plan  for pediatric Graves is as follows: for three years they shut down the thyroid with anti thyroid drugs (Strumazol) and replace it with a synthetic thryrod hormone. Then they stop all medication, and the expereince is that in 60% of of cases the disease has run its course/gone into remission, 40% of cases it is still active. So they restart for another 3 years, then same odds as before. If the disease is still present, then they continue the same treatment for another 3 years. It is only if there is no remission after 3x3 years that they even consider surgery or radioactive iodine ablation.

Within 9  months we had the dosages worked out. And above all, within weeks of starting treatment, he was our happy old kid again--no longer the volcanic stressed out anxious kid who couln't sit still.! But his eyes were getting worse, not better or staying the same, as we had been told to expect.  So he was started on Selenium, on the recommendation of the opthamologist, not the endocrinologist, who approved, but never really "took ownership" of the selenium treatment.  Now it turns out that the Selenium inhibits the uptake of the L-Thyroxine (thyroid hormone replacement) so that he was radically HYPO and no one noticed.

So now we're a bit stuck. He's stayed on the Selenium and we've pretty much doubled the dose of thryoid replacement. I've urged our endocrinologist to take on responsibility for the Thyroid Eye Disease which is a part of the autoimmune disorder, and not just the thryoid.  I'm not convinced about the dosage of Selenium -- just taking half the adult dose seems a bit simplistic.  But our endocrinologist is reluctant to try other treatment of the bulging eyes, because they have major side effects taht you don't want a kid to go through (risk of damage to internal organs, etc)

Does anybody have any experience about treating the Thyroid Eye Disorder during the acute phase of Graves Disease?

Best wishes,
Graves mom in Belgium

[judymommy]

I too have a 14-year-old son who was recently diagnosed with Graves Disease.  We had also had him evaluated for ADHD (mostly for focus issues) and anxiety before a family member, who is a nurse, noticed his enlarged thyroid.  I believe (and can see looking at earlier photos that there is an enlargement as the base of his neck that went undetected) that this has been working on him for quite some time. I cringe at how his teachers would give him such a hard time about his handwriting (caused from hand tremors). Now that I have been researching the symptoms of hyperthyroidism it seems ADHD and anxiety are two common misdiagnoses. Now that school has begun I have questions regarding schooling up to this point.  My questions (many guilt ridden for not having caught this sooner) are: 1). If this has been working on him for some time his academics have undoubtedly been affected...what has he missed and how can I help him catch up to where he would be if he hadn't had this disability?  2). How can I make sure he gets what he needs at school? 3). What can be done to make sure he is caught up to his full academic potential?  He is a freshman in high school and I feel as though he has had many lost (maybe that's too dramatic, lets just say "less academically substantial") years battling the effects of this disease; ultimately lacking full understanding of concepts that would have been the foundation for grasping higher level learning?

[honeypie42]

Hi

My daughter is 3 and found out in jan 2013 she has graves fisease with goiter, rapid and enlarged heart.  She started on 15mg cabimozale and 12.5mg propanalol.  Her levels still have not stabilised and has been on 30mg cabimozale for past three months and still her levels are up and down not in the normal ranges.  Her mood swings, panic attacks, lethargy and hyper are awful to watch.  How did the thyroidectomy go with your little one did you ask for her to have it done or did docs suggest it.  The endo we been seeing said that rai was his next plan but very afraid to put her through this as I have learnt there is a risk of leukemia later on in life so this would not be an option.  Any advide you could hive me regarding uour daughters journey with graves would be appreciated.

A very worried mam.

[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

[kjprincess24]

My daughter is 4 when she was diagnosed with Graves Disease. Her doctor thought she may be ADHD but turns out she had Graves and the only way we found out she had Graves Disease was during her surgery to get tubes in her ears her blood pressure went up to 166/122. We had to figure out the cause of that. It has been only 2 weeks since she was diagnosed so I am learning about all of this stuff. They told me it wasn't very common in children so it kinda freaked me out but finding all of you guys has helped very much! She is taking 5mg of Tapazole and 5mg of propranolol, which I have to check her pulse rate everyday to make sure it doesn't get to low.

[annb352]

MY DTR (10Y/O) RECENTLY DX W/ GRAVES DZ. SHE HAS THE HIGH HEART RATE, BULGIN EYES, SMALL GOITER. ENDOS FIRST CHOICE OF TX IS RAI (RADIOACTIVE IODONE ABLATION) WHICH BASICALLY KILLS THE THYROID AND UR ON LIFE LONG MEDS. BUT I AM AWARE OF ATD (ANTITHYROID TX) WITH THE POSSIBILITY OF REMMISSION. I AM SO TORN. IS THERE ANYONE THAT WENT W/ RAI TX. WOULD LIKE TO KNOW WHY YOU CHOSE THAT VS ATD.

[Phyfer]

My daughter (12) has been diagnosed with Graves, just today. I have been trying to get all information on the disease, as you will know I am very scared of what it could mean for her. Maby I am just peranoid but still I am a father. Is there anyone that can help me, it would be apreciated. Contact me on the following: ***@****

[missourimule]

I am a 53yr old woman and was diagnoised with Graves disease when I was 15.  I would like to talk to you more about how this disease has affected you as you have begun aging.  Please let me know what would work for you to answer some of my questions about your treatment and how you went about it.  

Thanks

[buster101]

My daughter who is now 7 was diagnosed with Graves, in 2006 at 2 1/2. The thyroid has been suppressed for the past 3 years, and she has lived a normal happy life taking 15mg of Carbimazole daily. One of the early complications was that she also had undiagnosed coeliacs disease, which was negating the effects of the carbimazole. She has now been gluten free for just under 4 years. Eventually she will have a thyroidectomy, but only when we feel she is mature enough to cope with the operation, and obviously the older a child is, the less complicated the operation. This is just to reassure people that children can lead a normal life once the thyroid is under control. Good luck

[lovingmom07]

Well, where do I start? My son just got diagnosed with Graves disease last week. Now we are in the process of deciding on treatment. I'm leaning more towards the ablation? BTW my son is 3 1/2. I started becoming worried about him about a year ago. I had him tested through our school district for developmental preschool due to the lack of speech. He was excepted for the speech services and PT services due to his low muscle tone. He started the new school year in August. Which he loves. My son gets along with other kids and likes to interract but I can tell the other 3 1/2 yr olds are miles ahead of him. He runs funny, doesn't walk funny but does on his tippy toes when he has no shoes on. He walked when he was a year, sat up when he was suppose to, did all the milestones when he was a baby and then it just halted. I took him in for his 3 year well check and expressed my concerns with him having loose stool for 6 months (ugh) and him not being potty trained and also his developmental delays. I was crying of course during this explanation! She began to check him over and noticed the heart murmur. So off we went to the pediatric cardiologist who came back and said he had mild dialation of the pulmonary valve & aortic valve and mild to moderate mitral valve regurgitation which was causing the left side to be slightly enlarged. Went back to the pediatrician which in the mean time had run some tests on his stool, blood, muscle and everything came back fine except the thyroid. Went to the endo and he thinks he has Graves. He has the buldging eyes, rapid pulse, high blood pressure, feels warm to the touch, has sweaty feet, goiter, what else the list can go on. We now have him on a beta blocker until we start treatment. The endo said that all the symtoms including the diarreah and even the heart would get better when treatment starts. Oh I forgot to mention the cardiologist thought he might have a connective tissue disorder because of the symtoms with the heart and his loose joints. I'm going insane with questions in my brain. I don't know if there is anyone else out there that has had my experience but I'm not totally convinced that all he has is Graves? Developmental issues,loose joints,and muscle weakness really bother me. Next on my list is seeing the opthamologist. My pediatrician wanted me to go see them because people with connective tissue disorders usually have eye problems. Any input is appreciated. I guess I just need to be patient and see results myself to truely convince myself! Lots of luck and hugs to all of you!

[autoimmunerelated]

I was diagnosed with Graves Disease when I was 15 years old. I am now in my early 40's. I was given treatment base on a study out of Japan using antithyroid drugs and synthyroid. They kept me synthetically slightly overactive for an unknown number of years. I was on it 17 total, but not sure when they decided it wasn't a good idea to keep me overactive. Back then, the 'specialist' I had been sent to said it was rare for such a young person to have Graves. I am glad to see more MD's checking the kids. Maybe it was rare because they didn't check for it. I just want to make sure all of you who read this or follow this forum know that if you have Graves Disease, you must be checked throughout your life for Autoimmune Pernicious Anemia. I was diagnosed with this condition about a year and a half ago. LONG PROCESS! Let's put it this way, I had to be the one to ask for certain tests! This is another 'rare' disease. My serum b12 was low. By the time the serum b12 test shows up low, there is nerve damage. I felt like I was slipping away. So, here are the tests to make sure you get at least once a year: MMA (serum or urine), Homocysteine (serum), and B12(serum), as well as a complete blood count and antibody tests for antiparietal cell antibodies and anti intrinsic factor antibodies. I will caution you that my blood count appeared to be borderline low but otherwise normal. The reason? I had three types of anemia! When you have PA, low folic acid AND iron deficiency anemia, they almost seem to cancel each other out on the labs, but the reality is that your blood is really messed up and your not getting what you need. I have had to educate myself as many of you by pouring over various internet sites. A big help is 'Could It Be B12, An Epidemic of Misdiagnoses', a book that has given me much information that even my MD didn't seem to have. Don't just take b12 supplements an think it will prevent it. It won't. The only way I can absorb b12 is through monthly injections. I hope someone reads this and gets checked before they suffer the potentially permanent nerve damage that occurs with PA. Thanks for having this forum.

[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

[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!

[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!

[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]

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!