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#1 June 26, 2013 08:29:39

Stymie
From: New Lenox, il.
Registered: 2013-02-18
Posts: 195
Profile  

My 4 year old son just diagnosed with Grave's Disease

I am so sorry you are dealing with graves in such a young one. It is hard for us as adults to manage this let alone a child.

My advice to you is just to be his advocate. And do what you feel is best for your son.

God bless.

Diane


“Learning how to dance in the rain”

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#2 July 10, 2013 01:28:26

wendyh
Registered: 2013-03-01
Posts: 16
Profile  

My 4 year old son just diagnosed with Grave's Disease

Hi kimberley

Sorry to hear about your lille boy. My 3 year old daughter has graves disease, rapid and enlarged heart and a goiter. At the moment she is on 30mg of carbimozale and 15mg of propanalol. Her levels havent stabilised as yet. Due to repeat tests next week. She has had this for a year and been on medication for 7 months. There doesnt seem to be a lot of knowledge with graves in a young child. I know what you are going through it terrible watching their mood swings etc… the endo mentioned rai treatment but very afraid of this as there are risks later on in life. Is your little one on meds and how is he doing. I will keep u posted on my daughter and would be great if you keep me updated on jordan. Thinking of you -you are not on your own

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#3 Feb. 4, 2014 20:46:40

jordansMOM
Registered: 2013-06-18
Posts: 2
Profile  

My 4 year old son just diagnosed with Grave's Disease

Thank you all that replied, your comments made me feel a lot better that i'm not in this alone. I know its been 6months, and truly just getting to read these post…sorry:-( but its been a battle with Jordan. It took him 4 months to start responding to the Methimazole and a lot of reading and praying on my part. It's taking me a few months to even talk about his condition without crying. Its hard watching him go through what he's going through at 4yrs old! But as of today I can happily announce his liver and heart are now normal but we're still battling getting his T3's and T4's withing normal range. This month his T3's were 254 and t4's 1.8. instead of going down his numbers went up this month, so now we were instructed to give 30mg of Methimazole and consider RAI or surgery. I'm nevous about both and treatment options but hoping this increase in medication will buy us some time.
Thank you all again for your responses…

jordan's mom Kim

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#4 Dec. 5, 2017 17:15:45

CTquinn
From: Seattle
Registered: 2017-12-05
Posts: 5
Profile  

My 4 year old son just diagnosed with Grave's Disease

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???

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. …..

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.


Son diagnosed November 2017, though his eyes have been bulging since June 2017.
Son was diagnosed at age 5, almost 6.
Seattle area
Hyper/Graves with Graves' eyes/TED


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