[Ski]

#1061434

Hello and welcome,

Graves’ is rare in small children, but we have seen them (and their parents) at our conferences. There are some ways children have an easier time with Graves’, and there are some ways it is more complicated, but I hope you’ll get some input from the parents who’ve dealt with it themselves before long. In the meantime, I can offer a little bit of information I’ve learned.

Eye symptoms: children typically suffer the least with eye disease, and usually affected more in the fatty tissue behind the eyes than the muscle tissue, so it tends to resolve pretty completely by the end. It can take a while to get through the process of TED symptoms (it has a pretty well-defined disease curve that varies in length of time, but it "ends"). In the meantime, your son may have some emotional upset related to his eyes being different, if they get very bad. It is NOT common for kids to get the worst eye symptoms, but any changes can be tough for a 6-year-old, so you may give extra attention to that, if it comes up. See a counselor, as well as doing things like getting him cool sunglasses to minimize the feeling that he looks different. It’s a good idea to begin a relationship with an ophthalmologist or neuro-ophthalmologist who has treated Thyroid Eye Disease patients before, so they can keep track and give you an idea of the options. It can be complicated, but is very individual in the way it affects patients, everyone has a different story to tell.

Adult patients have three choices for treatment: anti-thyroid drugs (ATDs) [there are two, PTU and methimazole], radioiodine ablation (RAI), or thyroidectomy (TT). For the most part, doctors use ATDs by default for kids, because the other two are permanent solutions, and young patients have hope for periods of remission before needing to consider those permanent solutions. PTU has been contraindicated for children because there have been cases of liver failure, so methimazole is typically the choice of treatment for children. You should know it also carries the risk of liver damage (though at a lower risk than PTU), and rarely there can occur a dangerous lowering of the white blood cell count, but these typically appear in the first weeks of treatment, so the doctor may check for them initially, and after some period of time it’s far less likely, so you can relax a bit. Also the dose will likely be lower as treatment progresses, which reduces the risk as well. It needs to be taken pretty regularly in order to be effective, which can be tough if your son has trouble with pills. There is a process through which they figure out the right long-term dose for him, which will start with higher doses in order to bring the thyroid levels down out of the hyperthyroid range, and lower doses afterward to simply maintain normal thyroid hormone levels. The signal to the doctors to lower the dose is when the patients goes hyPOthyroid, and that’s not very comfortable. This will need to be monitored and adjusted through blood tests, so that may be tough as well. Try to figure out some way to minimize the trauma with blood draws, because it’s going to be a regular part of your life for a little while. In the longterm, it will never be needed as frequently as it is during the beginning of the treatment process, but right away you’ll likely be visiting the lab quite a bit.

Once you find a good dose for him that keeps his levels stable, you can start to see some real healing and improvement. That may take a while, but every day should be a little better.

Kids have issues with concentration, acting out, and muscle weakness while they are hyperthyroid, so it’d be a good idea to get a plan in place with his school in the fall. By then you may have reached some stability for him, but there can still be spikes of hyperthyroidism during periods of extreme stress or illness, so everyone should have a conversation about what to do to completely support your son through his school day. I think you’ll have a better idea of what that will mean for him once the school year starts, but do make sure that the teacher and the administration understand clearly what’s going on with him and the status of his treatment.

There is one thing that goes along with Graves’ that you will likely have the hardest time dealing with ~ we call it "Graves’ rage," and it comes upon us rather randomly throughout the hyperthyroid state. I remember going utterly apoplectic over things that should not have affected me that way. Sometimes even WHILE it was happening I knew it was ridiculous, but I felt powerless over it. In a 6-year-old, it’s hard to know when it’s that or when they’re just having a tantrum, so you will need to figure out some way to handle it that doesn’t necessarily presume that your child is being willful or unreasonable. It’s hard for him too, I know that.

I hope this helps! Feel free to ask any specific questions that come up during the process, or just come here to vent. We know how it is to be a GD patient, and believe it or not, we understand the frustrations of having to deal with us while hyper, so we’ll be here for you.

[chilborn]

#1061435

Thank you very much for your time in explaining some things about Graves to me. It was very helpful.
My son is on methimazole and I have noticed that he will randomly starts crying sometimes but not for long and seems to be bruising very easily (Is this normal)

We live in the Waterloo, ONT (Canada area) and I was wondering if you know where I might find any information on support groups in the area? I would like to hopefully meet some other parents who are dealing with this as well and maybe the kids could meet

Thank you again

[Bobbi]

#1061436

Kimberly may know more about the existence of support groups in your area. I just wanted to add one thing I thought about in reference to Ski’s comment about sunglasses. We can become light sensitive while hyper. If you detect your son having difficulty with bright lights — even indoors — that could be what is going on. Also, in adults anyway, thyroid disease causes the quality of our tears to change. We "cry" more easily, even though we are not necessarily crying. Our tears become quite watery, they do not stay on the eye as long as normal tears do. So the slightest thing can cause them to run down our cheeks. And, if this is going on, our eyes feel dry a lot of the time. If your son complains of "gritty" eyes, that is probably what is going on. Or if you see him rubbing them frequently. It is extremely important to keep the eyes well-lubricated, otherwise we can get scratches on the cornea. And corneal scratches, I learned from hard experience, do not heal well with dry eyes. There are products called artificial tears (a lot of different brands, in different consistencies) that we use to keep our eyes lubricated. Some of us have to use them more than once an hour. Again, I don’t know if this problem occurs with pediatric Graves eyes, but you might want to be alert to the symptoms just in case. These artificial tear products are easy to find. Just make sure they are not the "get the red out" type of eye drops. Nor are they drops for "allergic eyes." A pharmacist could help you if you get confused…..there are LOTS of eye drop products available.

[Krisann79]

#1061437

I don’t have any advice but I just wanted to reach out and let you know my sister was diagnosed with Graves around the age of 8 and she has lived a completely normal and healthy life since she found out and had it treated. I just wanted to tell you this because as a parent myself, I bet you’re very upset. But I believe he will do just fine once he gets leveled out. Best of luck to him ” title=”Smile” />

[chilborn]

#1061438

Thank you very much for your support in understanding my son’s condiition.

[Kimberly]

#1061439

chilborn wrote:We live in the Waterloo, ONT (Canada area) and I was wondering if you know where I might find any information on support groups in the area? I would like to hopefully meet some other parents who are dealing with this as well and maybe the kids could meet

Thank you again

Hello – It looks like the closest groups to you would be in Rochester and Buffalo, NY. If you are available to travel, you might also consider attending the Foundation’s Patient & Family conference, which is set for November 4th-6th in Buffalo. Keep in mind that the majority of attendees for the support groups & conferences will be patients and spouses, since it’s actually fairly rare for children to be diganosed with Graves’.

There was an article published last year that addresses treatment options for children…if you can send a request to info@ngdf.org, the Foundation can get a copy to you via e-mail.

Wishing you and your family all the best!

[chilborn]

#1061440

Thank you very much.

I was wondering to if these side effects are normal?? My son just started 20mg/day Tapazole/Methimazole (only been on 5 days)
Yestaurday he started not listening, talking back, pulling temper tantrums, a few rage fits, and since yestaurday I have noticed almost his intire bottom of his leg is covered in bruises. (I know boys get bumps and bruises but I have never seen him this bad.)

[snelsen]

#1061441

Hi, this is a suggestion for you to pursue. I have worked in medicine in the adult health care field for 5 decades.
One thing I have learned, and I include myself, is that docs and nurses who work with drugs for adults, don’t know a darn thing about pediatric doses. Ideally, it would be marvelous if you can find a pediatric endocrinologist for your son, for this will be a long relationship. Is this possible?
I walked over to our pharmacy, talked to the pharmacist about pediatric doses of Tapazole, and learned from this pharmacist that the calculation for kids is as follows:
Pediatric
Initially, the daily dosage is 0.4 mg-.7 mg/kg of body weight (NIH National Institute of Health web page plus my pharmacist.

So I am suggesting that you do call his doctor tomorrow morning. It will be VERY important for your to have blood draws (lab tests, of TSH, T3, T4 and liver function studies (LFT) as he takes this drug. If you doctor has told you all of this, I suggest reviewing it again, to be sure you are on the same page. This is a lifetime situation for you, so it would be so nice for both of you if you ask the endocrinologist to contact the parent any other pediatric patient in his practice, and ask permission for you to contact them. Just another suggestion. It is SO HELPFUL to have support, and know people who are going through the same thing and I realize that this is exactly what you are looking for.
Of course it is very upsetting to have your son so sick. I think it is very important for you to call about how he is doing, and definitely mention the bruising on his legs. It is true that when we are hyperthyroid, that rage, anger, anxiety,
are all part of the process, plus most of the other symptoms you have mentioned.
Here is another beginning reference for you re children and graves
http://www.ngdf.org/pages/45

The good good thing is, that FINALLY, there is a diagnosis. Your soon WILL get better. I am so sorry that this was missed since he was two years old. This is not that uncommon, unfortunately, for doctors not even think of Graves’.
There is a lot of effort to make that a better situation. The longer he is on the drug, the better he will probably feel.
but the labs and your reporting are super important.
Do write again.
Shirley

[chilborn]

#1017881

Hi I am new to the Graves foundation,

My 6 year old son had some symptoms of Graves since he was about 2 years old[/b],(Difficulty sleeping, sweating really really bad,nervous for no reason, heat intolerence, rapid heartbeat, and frequent bowel movements, very hyper and difficulty focusing and retaining things learned) but didn’t become really sick until about 4 years old. When my son was 4 years old he started throwing up about 1 day a week just out of the blue, weight loss, waking up in the middle of the night with tremors, vomiting and his heart pounding so fast I thought it would rip threw his chest.

He is now 6 years old and just diagnosed with Graves disease on Monday and I am really nervous and I don’t know where to find much information on everyday life and what to expect in the future for him. The doctor pointed out to me as well that my son has the stare with his eyes.

If anyone has any suggestions, advice, or books to recommend please let me know.

Thank you

[Author]

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