[Channing]

#1018360

Hi, I just came across this website. My 3 year old daughter has graves disease she was diagnosed shortly after she turned 2 years old. Although i had been complaining to her doctor for several months that something was up with her and he kept tellin me she was just different. Anyways i am just curious to know if any more parents out there have a child this young with graves disease and what is being done about it. I want to know how other kids with it cope and what kind of things they deal with. My daughter tends to have serious mood swings and isnt as coordinated as other kids her age. its really easy to notice things with her because she has a twin sister who is perfectly healthy. they were born identical twins but now i have to argue with people who tell me they are fraternal due to the changes in her appearance, her eyes are one of the biggest indicators, shes several inches taller than her sister as well and just isnt as active as her sister. it bothers me alot and i always worry if she is in pain or if something is bothering her. she is very clingy also, that creates more worries because i dont want her sister to think she is getting any less attention. her sister doesnt understand that she has graves disease she just knows her sister has to take medicine everyday and she doesnt. i think she is jealous sometimes, i dont know, i have many concerns and was just tryin to reach out and see if anyone out there is in the same boat or a similar one. thanks!

[Kimberly]

#1064241

Hi Channing – Sorry to hear about your daughter’s diagnosis, but glad that you found us. I am hoping that Laurie (bfun) will check in here, because she also has a little one with Graves’, although not a twin.

Hopefully, you have found a good pediatric endo that you have confidence in, as this will be really key in helping your daughter through the treatment process.

Feel free to post questions here, or just to vent if you need to. We all understand here!

[mamabear]

#1064242

KUDOS to you in finding out what is wrong and not just letting the dr. keep saying that!

I’d like to say that Identical twins are very much different, I have known several of them. I want you to know that what I am about to say comes with care and having 4 kids of my own (non of which have graves).
Every child Graves or not, illness or not is very different in their own way. Yes you noticed that she is different in other ways but remember she is still ONLY 3 and every kid can have a tantrum/mood swings and the whole 9 yards! Just because her sister is her twin doesn’t mean that she too will have mood swings, they are individuals and should not be compared to each other. I know it’s hard not to but it’s the truth.
I have two boys 15 yr, 7yr and two girls just turned 6 and 4. Let me tell ya, if my 6 year old girl was my first I would never have had another. I thought she too had graves, she’s always in higher percentile, she is a big girl yet not overweight, she is tall than most girls and at age 5 I use to be asked if she was going into 1st grade. She is a HIGH MAINTENANCE child. Simple as that, wish I were wrong but she is. Once you realize that you have a high maintenance child life gets easier, you know that you can’t treat them the same as the rest. You of course can’t let them get away with things either but at least you know what you are up against. Of course her Graves has something to do with certain things she does but for the most part she is who she is.

I am a VERY bold person(in some cases), if when you say they are identical someone says no they aren’t, I would simply say "yes, as a matter of fact I was there, one of them has Graves’ disease and it causes changes, if you would like to educate yourself with the disease I have a great website for you". Don’t be nasty, a bit of sarcasm wouldn’t hurt but nothing nasty to your tone. You want to inform them that you are not a foot and that they should mind their business. Or it might prompt them to look up Graves, you never know!

Children are more resilient than you think. They both know of your worries because kids sense it in your body language so try to relax and enjoy your babies while you can, they wont be little for long. Soon enough you will be dealing with the lies and them being sneaky … it will be fun! Remind your girls that you love them. My high maintenance girl is fickle she wants a hug but wont hug you for long. The 4 year old girl wants to hug all the time and wont let go of me and it can be quite annoying at times. The boys well they are boys, once 11 hit my 15 yr old didn’t want me and I’m sure the same will happen with my 7 year old. Every child is different even if they have the same genes.
IF you are able to , take out each girl separately once in a while.
Ask grandma to take one so you can spend time with the other.
Ask your husband to watch the one who doesn’t want to do much and go outside and play with the other one, have hubby do some coloring with the one he has.
OR try to get the girls to get active outside, please make sure you check with dr. about the one with graves and make sure that it’s ok for her to play and make sure you know what her pulse rate should be and what to check for.

Most imporantly, relax….. Graves or not they are your girls and they are individuals with different thoughts and looks and actions. The perfect kid to the high maintnance ones…. they are all unique regardless of disease or not. Once you realize that she is who she is it might get easier. Look online and see if you can gets some tips with a child who has a tantrum or has a mood swing.
My one big thing with my 6 yr old was she would have a fit in the store. I was ready for it, knowing I didn’t really need anything but we went anyway. I told her if she screamed or cried we would get back into the car and go home and she would be punished. She screamed and I Left. IT WAS the best thing I ever did. I did it with the others too and it sure helps, them knowing I mean business. You adapt to things but you have to know what you are up against. So she has graves and seh is high maintence…. Now you know and now you can work through it. Most of all your other one knows you love her, tell her know that your sister needs medicine because she has graves disease and it helps her. Not try to think of some other name or lie about it. THEY ARE twins and she already knows something is wrong with her sister, her gut and heart feel it, she probably knew before you did but she is so young that there was no way of telling you. They will always have a bond, jealousy is always going to happen that is just natural. But for now they know you love them both, it’s you who feels bad and that is something you need to work on. Love yourself and know you are doing the best you can!

[Channing]

#1064243

My daughter does have a very good doctor thankfully. I got rid of the doctor that would argue with me. I do agree that High maintenance is a good way to describe my daughter with graves lol… I just do not want her to think she is different from other kids or her sister ever. But she is regardless of the graves. Miss Priss is what we call her because she is so high maintenance! Thank you for the replies I appreciate the advice and offer to vent!

[samsmom]

#1064244

Hi-
I have a 7 year old that was diagnosed a couple of years ago. When she was first diagnosed, I hit the internet and wanted to read everything that there is to read about pediatrict graves. However, as I’m sure you’ve found out, there aren’t a lot of kids out there with gd. I don’t have much time to write now, but wanted to post and say hang in there. I know that it is difficult to watch your child get bloodwork and feel just plain lousy some days. But it does get better. The key for us wasa great endo that has a pediatrict background. We were blessed to have a pediatrician that was able to connect us with a children’s hospital. On a side note, my daughter is also high maintenance. I was convinced that it had to do with her gd and brought it up several times during her appointments. Wrong. It is just her personality. Perhaps the fact that she is so headstrong and stubborn is what has made this journey a little easier for her to conquer. Please feel free to contact me if you need to vent or just share stories.

[ettena]

#1064245

i have a 15year old daughter who we have just found out has graves disease iam out of my mind with worry she has had all the test done and we have been told that there is no cure if there is anybody out there who has any idea of what to do next or which doctor is the best to contact could you please let me know thankyou

[Kimberly]

#1064246

ettena – Sorry to hear about your daughter’s diagnosis, but glad that you found us. This board is a great source of information and support.

GD is an autoimmune condition where the body’s own immune system mistakenly attacks healthy tissue. In Graves’, the targets are primarily the thyroid (which usually causes hypERthyroidism), sometimes the tissues behind the eyes, and occasionally the skin, particularly in the shin area.

While there is no "cure" for the autoimmune component, if your daughter is currently hypERthyroid, there are three different options to get the hypERthyroidism under control. One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. The other options are to destroy the thyroid by taking a pill with radioactive iodine (RAI) or to surgically remove the thyroid. All three treatment options have pros and cons, so you will definitely want to do some research and discuss this with an endocrinologist before committing to a decision.

We aren’t allowed to recommend specific endos on this site, but you can search for docs on http://www.thyroid.org or http://www.aace.com (American Association of Clinical Endocrinologists). On the AACE site, you can specifically request a doctor who specializes in thyroid disorders. Since many endos primarily see diabetes patients, these sites can help connect you with a doctor who is more familiar with thyroid issues.

Also, I don’t know where you live, but there are several active Graves’ Disease support groups around the country. From the home page at http://www.ngdf.org, highlight "Community" at the top of the page, and then click "Find a Support Group." We also have an upcoming conference October 22-24 in San Diego, which is a great opportunity to network with doctors and fellow patients.

There is no "quick fix" for patients with Graves’ Disease. No matter which treatment option you choose, getting your daughter’s thyroid levels normalized will take time and patience. But in the end, she *will* get back on the road to good health.

Best of luck!

[Bobbi]

#1064247

Just to emphasize something, ettena. While you cannot get rid of the antibody component, the treatments available to us DO work to return us to health. While the thyroid is a very important gland in the body, many of us live well without a thyroid. Many others of us live well on the medication that interferes with the thyroid’s production of thyroid hormone. The important thing is regaining control over thyroid function, either via medication or thyroid removal. Both options can give us back our health.

[bradybunch6x1]

#1064248

Hi,
I am going to try this again…for some reason it wouldn’t post. My name is Valarie, and I have a set of twins who are two that are not identical, but none the less still hard to manage. Our twins were born with Neonatal Graves, this is not the same things as what your daughter has, as it is a passing thing. We also have a 12 year old son that has Graves, as well as myself.
I would like to say that sometimes just letting others have there own thoughts about your children is easier than getting upset over it. It is hard for people to say things about what we know to be true. I have had people tell me they think our twins are identical, and that is so obviously not so. They have different color eyes, and are built differently. They do have the same hair color, but that is about it. I just let it go.
Do people always ask you "Are they twins?" They do us all the time. Once a lady did that as we were walking out for Walmart and I replied"No, they just had babies on sale."
As for the growth difference in your daughters, that might very well change on its own. Many children with Graves grow alot faster than others there age, but eventually they stop the growth, and the other catch up. You daughters will probably be about the same hight when they get to maturity, just maybe not threw childhood.
I can for sure understand the clinging part. We have one this way as well. I so know the feeling your having about hoping to not make the other angry because mommy is holding her more. We have actually bought a chair I can sit in with the both of them, so that we can fix the problem. I won’t hold one if they both want it, unless I can sit. I hope, and I am sure you do too, that they out grow this whole thing.
If you just need to talk or want to vent or anything let me know,
Valarie

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