[Anonymous]

#1101528

Welcome to the board — I’m sorry that you’re in this position, but please take heart. Your daughter will get better, and actually, congratulations for getting the diagnosis! You have no idea how many people have gone months, even years, before a doctor has thought to ask for the relatively inexpensive, remarkably simple blood test that tells about a patient’s thyroid levels.

You can also take comfort in the fact that pediatric Graves’ (diagnosis prior to age 18) is usually less severe and easier treated than adult Graves’, AND if your daughter suffers any eye involvement, it is more likely to be a mild case and also more likely to return to normal afterwards.

A good, basic book on thyroid disease would be a marvelous investment for your family at this point. There is a list of recommended reading on the NGDF website. The book “Your Thyroid: A Home Reference” comes highly recommended by many warriors, and the book “Graves’ Disease: In Our Own Words” is absolutely critical for you to have, in my opinion. It covers our treatment options in a lot of detail and also contains information regarding the emotional side of this disease — for the patient AND for the family. If you order these books THROUGH our website (in other words, you click from our recommended reading list into Amazon and order them there), the NGDF gets a small percentage of the purchase price.

I can tell you that your daughter is likely feeling pretty rotten right now. I’m sure that’s not news to you. At her age, I’m sure she’s got issues with school. It would be wise to go to her principal and teachers and let them know exactly what’s going on, once you have gained a basic understanding of it yourself. She is likely to have difficulty concentrating and extreme difficulty with her memory. Perhaps her school can grant her some concessions while she is in treatment so that her education does not suffer. Drawing everyone you can into “the circle” will help. NGDF bulletin #45 (you can find the list of bulletins under the main website link to “Join Us”) covers some details of Graves’ Disease in children and may be of some use when you are talking to her schoolteachers. You can buy the bulletin by itself or you can join the NGDF and get six bulletins for free — and you can have them e-mailed to you within days. (Snail mail could take a while.)

Very basically, there are three treatment options for someone that is hyperthyroid due to Graves’ Disease. They are anti-thyroid drugs (ATDs — in the U.S. we have two types: Tapazole and PTU), RAI (radioiodine treatment), or surgery. For your daughter, I would guess that the doctor will recommend ATDs to control her symptoms. The typical path for ATDs is to put a patient on a high dose to bring the thyroid hormone levels down, then check the blood levels often and adjust the dose as the levels get under control. Eventually, in a perfect world, the patient reaches a dose that controls the levels just right and they remain stable on the ATDs. Getting to that point can be a bit of a challenge, with the patient swinging between hyper and hypo. Regular blood testing can alleviate some of this, as well as vigilance in taking the medication (same time every day is critical). PTU tends to be taken 3 times a day, Tapazole can be taken just twice and, on lower doses, once a day. It is possible for a patient to be allergic to these drugs, so keep your eyes open for a persistent rash or hives. Also, since the ATD is processed through the liver, it is typical for the doctor to check liver enzymes regularly to make sure that the liver is continuing to function properly. From what I understand (I was not on ATDs for long), the doctors usually check that after an initial period of ATDs and then not so frequently after that, but with some regularity. Another possible side effect of the ATDs is suppression of white blood cells, which help us fight off infection. It is a serious, but VERY rare, side effect. The doctor will probably advise you to watch for a sore throat with a high fever, and to get a WBC count immediately if that occurs. I understand that discontinuing the medication will reverse the side effect.

I’ll hold off on discussing RAI or surgery right now, because I honestly don’t believe your doctor will recommend either one at this point. If you get a good book, you can read up on those options, in case your daughter does not respond well to the ATDs. You can also use our search engine and search up nearly anything you are wondering about.

Please help your daughter to find some soothing activities for herself when it is possible — it will make a world of difference in her overall outlook and health.

Again, welcome to you and your family — we’re here for you, 24/7. Just a click away.

-Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1101529

thanks so much for the information regarding useful books for my family and I. We still haven’t told our daughter because she will asks a lot of questions and we want more info so we can be better prepared with some answers, rather than ” I don’t know” and leaving her more scared than neccessary. It was a fluke thing how she was even diagnosed. So far, she hasn’t presented with any of the syptoms that I have read in this bulletin board. Not sure how long she has had it, either. I guess we will have more answers after meeting with an endocrinologist.

[Anonymous]

#1028992

Hi,
Looking for all the info I can get. My daughter (13) was just diagnosed yesterday with Graves. Her dr is doing some more testing and setting us up with an endocrinologist. I know she needs a scan, but that’s about all I know. We are truly devastated.

[Anonymous]

#1101530

I know that this is scarey for you, but truly, if your daughter had to get a rotten autoimmune disease, Graves’ is one of the best of the bad choices. It is very treatable, and we can get healthy again, and live normal lives (except for taking some medication).

On the main website of the NGDF there is a list of recommended books. Each of these contains solid, factual information about thyroid disease/Graves’, the treatment options, and what you can expect from each. It will really help if you get one of these books and do some research –it should ease your mind a bit.

Remember, too, that when you are reading Boards like this one, that you are seeing the “sick” members of the Graves’ group, and not the ones who have gotten well again. (The names here change about every four months or so if you want to check. )

Bobbi — NGDF Online Facilitator

[Anonymous]

#1101531

YOU MUST REMEMBER THAT YOUR DOUGHTER IS SICK AND SHE IS GOING TO NEED ALOT OF SUPPORT THOUGH ALL OF THIS.I AM 25 AND HAVE GRAVES AND PEOPLE SOON FORGET THAT I AM SICK .DONT LET THE SUPPORT FALL SHORT . THIS IS GOING TO BE HARD ON ALL OF YOU.

[Anonymous]

#1101532

My 23 year old daughter has just been diagnosed with GD. Is sleep walking possibly associated with GD? She is currently on meds and will be going through surgery or radioactive iodine soon. Any information would be very helpful.
Thanks

[Anonymous]

#1101533

I have not heard of sleep-walking associated with Graves. But being hyperthyroid does interfere with our sleep processes. Insomnia is the more common occurrence.

Bobbi — NGDF Online Facilitator

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