[sjharner2001]

in reply to: Symptoms of Graves in Children? #1074979

Hi Cath,

My situaion is a bit different: being a nurse I knew of Graves, but not about it. We adopted our daughter when she was born and was not told of any medical concerns from her birthmom. Of course, her birthfather’s side was unknown. My daughter started c/o of itching. having frequent bowel movements, and her heart began to race early last summer. She does have prominent eyes, however, she has always had big eyes since being born. She hasn’t been gaining weight (33 lbs) and is a constant "grazer".
What tipped us off was that she kept spiking fevers about once every other week. Vomitting would accompany these fevers and they would resolve themselves in a days time.
In early August, she maintained this fever for 2 days and her pediatrician wasn’t able to see her, so I took her to an urgent care. Immediately, the doctor asked if she had graves. I was shocked! and of course, in disbelief. But I started asking that doctor questions and did my own research.
I ended up getting an appt with her pediatrician and low and behold her work-up showed out of range TSH, T4 and T3 levels.
I could kick myself you-know-where for not pursuing her symptoms earlier! I should have known!

From my experience (and if I had knowledge) that a blood relative has Graves or another thyroid disorder, I’d have had my daughter checked at an earlier age. The insurance may not have paid but at least it would have given me peace of mind. I’d definiely talk to your child’s doctor and see if thyroid tests can be run — especially with the symptoms you mentioned.

Janet

[sjharner2001]

in reply to: My son has Graves and we have questions #1075343

Hi Shannon,
I also have a child with GD. My daughter (3) had RAI in mid Nov. She is doing very well. Since she is so tiny, the dose she took was small. Because of this the radiologist was fairly flexible with "restrictions". We had her flush the toilet twice for 2 days, washed her clothes and bedding separately, made sure no one else ate off her plate. She was told to sleep in her own bed (no-cosleeping) and not to be around many others (family/friends) for a day. We have a 2 year old who stayed at Grandma’s and Grandpa’s the day after the radiation. All of her eating utensils and such we washed with the others in the dishwasher.
My daughter did very well with the treatment. The scariest part for her was the actual thyroid scan. Hey, I’d be scared with that big maching coming so close to my face too! Her medicine was mixed with Kool-aid that she drank. My husband and I were with her the entire time – through the scan and in the lead room – where she drank her dose.
For a few days after the procedure, she complained of her neck hurting. Tylenol took care of that.
She is getting blood draws every 3-4 weeks now. Since her RAI her TSH is already coming back up; her T3 and T4 are now detected (still high) where as before they were so high and out of range no result was provided.
Her hyperthyroid symptoms (itching, restlessness, etc.) seem to be disappearing. She remains on her beta blocker, but I have a feeling that will start being tapered off as her heart rate is the slowest it has been since last spring.
Before my daughter had RAI, I had a very difficult time choosing the treatment path for her. However, surgery was not an option for me. And both ped endos we met with discouraged meds due to her increased risk of side effects.
I hope all goes well with your son.
Janet

[sjharner2001]

in reply to: How many are like me? #1075119

Although I can’t answer for myself, I can let you know how my daughter is — She is 3 was diagnosed with Graves this past October. She was/is restless, unable to sleep, itchy, with a fast heart rate. At times she seems anxious. We sought 2 opinions of her Graves with ped. endos and decided on RAI for her treatment. She had the RAI in mid-Nov and I think now, is doing much better already. She is not as "up-tight" as before, for the most part her itchiness has subsided, and she is sleeping much better (like a normal 3 year old should be).
Her ped endo (which we absolutely love) talked to me in detail about future fertility issues. According to the Dr. she shouldn’t have fertility issues after having the RAI. Her Dr. also talked about her fertility if we chose meds. Her Dr. felt that she would have more issues with fertility with the meds, due to hormone fluctuations possibly causing a remission in her Graves. (hope that makes sense)
Regarding your insurance — aren’t you able to appeal the insurance company to get them to pay for some of it?
We are in the midst of an appeal with our insurance company. They claim my daughter is too young to have all the thyroid blood tests done so frequently.
I wish you well.
Janet

[sjharner2001]

in reply to: GD treatments / to seekingclarity #1075285

Hi Tammy,
I feel similar to how you verbalized feeling above on wanting the right treatment. My 3y.o. daughter was diagnosed with GD at the end of Oct. Her pediatrician said she never saw such a young child with her condition and referred us to a ped. endo. We had our visit and were given the options. I was skeptical of the ATD’s — (all the side effects I read about) Her Dr. said for a child her age w/ her severity, she was hesistant (she felt the possible adverse effects were greater in her condition) . I was even more skeptical of RAI — I couldn’t face killing off my 3 y.o.’s thyroid. Surgery — not an option in my book.
We consulted another ped endo. He again, gave us a similar answer: not to fond of starting ATD’s w/her, RAI (this Dr. felt was a "safer" route) and surgery.
I debated, my husband debated, I did tons of research and asked lots of questions…. both Drs said treatment is our choice, a difficult choice, but ours.
In the end we chose RAI. It was especially difficult for me, but I know this was the right choice. We are following up with the first ped. endo we visited.
My daughter had RAI done last week. So far she is okay, on beta blockers and going for lab draws every 3-4 weeks. She complained of mild throat pain.
Like everyone says here — you have to choose the best treatment that you feel is right for you.
Wish you luck and good health!
Janet

[sjharner2001]

in reply to: graves/RAI/pregnancy #1075325

Thanks for the information and reassurance I was looking for! I appreciate your help.
Janet

[sjharner2001]

in reply to: RAI dosage #1075406

I’m interested in hearing the doses used also.
Janet

[sjharner2001]

in reply to: swimming after RAI #1075597

Thanks for the wonderful comment! ” title=”Smile” />
I will add this question to the other dozen I have for her endo. Thanks for taking the time to address my questions/concerns.
This forum has been such a wonderful source of comfort, strength, and reassurance — and I have only been coming here for several days. I thoroughly enjoy reading everyone’s perspective.
Janet

[sjharner2001]

in reply to: Radioactive Iodine Treatment on Teenage Girls #1075609

Sally,
My 3yo daughter was diagnosed last week and her Ped. Endo told me this (in addition to what Ski wrote). She told us to remember that my daughter will always be considered as a Graves individual. So IF she has RAI and subsequent hypothyroidism, she will NOT be a hypothyroid patient — always an individual battling Graves Disease. Therefore the endo told us we need to keep in mind that when she is older, gets pregnant, she needs to tell her OB/GYN that she has Graves. There is a chance that the baby will be delivered with Graves. However, the endo told us this does not mean the baby will be a "Graves" child — it means the baby will have to get treated for Graves the first few weeks of life.

Being that my daughter was recently diagnosed, I’m still finding lots of fascinating info on Graves.
Hope this info helps.
Janet

[sjharner2001]

in reply to: my child has graves disease and more #1075705

Thanks for the names of books. I’m definitely going to check on those.
Janet

[sjharner2001]

in reply to: Daughter just diagnosed #1075679

I am glad I found you guys too! Your site has been a blessing to help with some of my worries!

The Ped. Endo. recommends RAI because she feels the risk of the white blood cell count dropping too great. She feels long-term wise that RAI is a better route to go; as my daughter’s condition after RAI will be more easily managed and the med (Synthroid) will be less toxic to her. She mentioned that with RAI SOME studies have shown a greater risk of cancer later in life. But she said that more recent studies have shown no difference, especially in the low dose of radiation she will be receiving.
I appreciate all the info and will be checking with you often!
Janet

[Author]

Posts