[CTquinn]

in reply to: Joint/Muscle Pain – How common? #1175027

What does joint pain feel like exactly? My son has graves, and he’s 6, and I’m sure he has pain. He describes it sometimes very well (“my arm hurts here”) and sometimes very vaguely (“i don’t like how my hip feels”)

I want to know what he’s going thru. I want to know how it feels, so I can help him recognize the signs.

He doesn’t take ibuprofen for pain, but doctor said tylenol was ok. I read about the tonic water. I’m willing to try anything for him.

I’ve never had joint pain, so I don’t understand, but I need to understand in order to take care of him.
The doctor’s last orders were “if he feels any racing heart or pain, let us know.” ummmm… he feels that EVERY DAY! so, should I call them EVERY DAY? …..

So glad to have found this site.

[CTquinn]

in reply to: Joint/Muscle Pain – How common? #1175026

Kimberly wrote:

When you are having symptoms that affect your quality of life, it’s important to keep fighting until someone will help you put all the puzzle pieces together…but it’s also important to keep an open mind along that journey and to leave no stone unturned in exploring *all* of the potential causes.

If you find research from a credible source that seems to fit the symptoms you are having, definitely bring this to your own doctors’ attention.

THIS. THIS is why I am the b**ch mom who always questions every doctor, even getting angry with them. My son can’t fight for himself yet (he turns 6 in 2 weeks), and he’s been complaining about pain since the summer. Why, WHY do i have to fight with the doctors AND the disease AND my tantrum-prone son (which, I know, is just the Graves, not my sweet and loving boy)

I am thankful that my son doesn’t have to advocate AND fight the disease — he’s got built in support with his parents. BUT, it’s hard to advocate when I don’t really know what he’s feeling, and he doesn’t always know how to describe it. Yet i KNOW he’s got joint pain, chest pain, throat pain, headaches, etc….

His quality of life is affected already. I hate this disease.

[CTquinn]

in reply to: Thyroidectomy scheduled #1179970

My god… I’ve been wondering how my son feels about this, and even though he’s only 6, I bet he can relate with your post.
Thank you for posting from a kid’s point of view. Thank you thank you thank you.

[CTquinn]

in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179993

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.

[Author]

Posts