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  • CTquinn
    Post count: 5

    My almost 6 yr old boy was just diagnosed with Graves and Graves opthalmology complications. He’s had it for at least 6 months (eyes have been bulging since then), but neither our PCP or urology doctors caught it until end of November (my child also has kidney disease, found at birth). The one who caught it? A substitute PCP because our PCP wasn’t available for a visit. Thank god for the sub.

    There is so little info about HYPERthyroid and Graves for kids. There’s so much info for HYPO and diabetes… why hadn’t I heard of Graves’ disease before??? Is this rare for kids? If so, am I with the right doctors?

    I’m looking for support and haven’t found much in my area, Seattle. Hoping someone here can help. We’re at Seattle Children’s, and I am thankful for that, but I still haven’t found any emotional support for it.

    This is a lifelong disease, and he’s only 6. Rapid heart rate, extreme muscle fatigue, sensitive to light, anxiety and irritability (quick to tantrums), and we’ve got his hydronephrosis (kidney disease) to handle as well. …..
    Is this rare for kids? If money and travel time weren’t an issue, am I with the right doctors?

    I hate this disease for my kid. I hate this disease for any body. I hate this disease.

    He is on methamazole 3x a day and antenolol 1x a day, plus eyedrops and eye lubricating cream at night.

    Lifelong. and we’ve just started. And i’m stressed, though trying not to show it to my boy.

    Search words: child, children, boy, 6, seattle, eyes, graves, ophthalmology, opthalmopathy, support

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello and welcome – so sorry to hear your little guy is going through this. :(

    The GDATF’s YouTube Channel has some great resources for parents. Under “Playlists”, check out “Graves’ Disease in Children & Adolescents” (a seminar that we did in conjunction with The Children’s Hospital of Philadelphia) and under “Videos”, check out the presentations from Dr. Scott Rivkees (Based in Florida) and Dr. Michael Gottschalk (based in California).

    https://www.youtube.com/user/GravesAndThyroid/featured

    The “Looking for a Doctor” section of this forum has a few options where you can search for a doctor near you. Most will let you select the specialty “pediatric endocrinology” – hopefully, Seattle Children’s has that expertise.

    I know that he feels crummy right now (been there, done that), but he should start feeling better once his levels are stabilized. (The meds start working right away to block the production of new thyroid hormone, but it can take a few weeks for his body to burn off existing stored hormone).

    In terms of the eye issues, it’s possible he will see some relief as his thyroid levels stabilize, but it would be helpful to get him in to an ophthalmologist for an evaluation. If he’s currently exposed to any second-hand smoke, be sure to keep him away from that, as it’s believed to be a risk factor in the eye disease. (Smoking is *definitely* a risk factor, but there’s not as much research on second-hand smoke).

    Wishing you and your family all the best!

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