Mother of 10yr old boy with MCTD

[Tracey DeHaan]

Hi everyone My son has MCTD and suffers from Raynaud's...He is still having episodes even on Medication .. he also has esophagus problems. I hate the thoughts of winter he already can't go outside much. I still haven't found anyone else with a young child who has this. Were any of you diagnosed in childhood?

[Kyrie Stabler]

I wasn't diagnosed in childhood, but in the early teenage years. about 14 or so.

For the reynauds, I highly recommend some reusable hand warmers. They're fun to watch change, and they get nice and toasty for about 1-2 hours.
http://www.hotsnapz.com/index.html

Also, L.L. Bean has clothing that is really warm. Flannel lined jeans and extra warm coats. I used those for winters up North.

They Reynauds is hard to control, even with meds.


Good luck, and I hope things get better.

:)

[Kathy]

Hello Tracey & welcome!
I'm so sorry to read about your son, God Bless him!

Kyrie is one of our youngest members and she gave you great advice. The hand warmers you should get plenty and keep them in his back pack, the car, at Grandparents & friends homes just so the warmers are always where he will be . Just in the event he forgets to bring one along, the warmers will be where he spends his time at.


I'm glad you are here, if we can help, just hallor!
Kathy

[Yvette]

Hi Tracey,
I wish you did not have to see your young son go through this. I didn't know it could affect a child. I was just aware of juvenile rheumatoid arthrits as far as connective tissue disease. I am 49 yrs old and just got diagnosed after beginning with symptoms at 33. I do recall having anemia when I was about 4 yrs old. My feet swelled up and I had big black and blue blotches on my legs. I couldn't walk because I was too weak. After that I had to take pills that were crushed up in applesauce but that is as much as I know about the anemia. My mother (who is 86 now) said that their was something wrong with my blood. I wonder if that was a first flare of this but I don't know. I do know that I was plagued with infections and mouth sores ever since I can remember. If I fell down, the sore got infected, if I got a cold, it turned to bronchitis. There just wasn't enough information back then and doctors treated my individual problems and never connected anything. Good luck with your son, I hope he finds relief with medication soon! Yvette