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 My Heart Be Happy
Posts: 9159
   
Location: Arkansas | I am so very glad you posted. . . . We were getting way worried about you and Izzy. I know you had mentioned AR Children's Hospital---would it be possible to just try it? I say that simply because it is supposed to be one of the top children's hospitals in America. And you bet your bippy if y'all were in LR, I'd be up there! My heart hurts for you as a momma having to watch Izzy suffer, so I pray God's merciful hand on her aches and pains, that they are alleviated along with your misery from seeing her go thru all that. Have a blessed Christmas with much love sent to all of you from Arkansas  | |
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 BHW Resident Surgeon
Posts: 25352
Location: Bastrop, Texas | I wish there was something I could say that would be definitely helpful, but I don’t know enough about Izzy, nor do I have any experience with this rare condition. I can make some general comments that might possibly be helpful, or somewhat encouraging.
It is not at all uncommon for these kids to linger for quite some time without fulfilling enough criteria to make a definitive diagnosis. Some kids develop a type of scleroderma with Raynaud’s phenomena after certain kinds of strep infection. In those cases, the good news is their disease is usually self limited and tends to burn out after a few years. I don’t know if she’s ever had a strep infection, but I’m throwing that out there for you. That would be a blessing.
The things that pose a threat to Izzy are more related to whether she has involvement of organs besides the skin, like the heart, lungs, or kidneys. If she doesn’t, that’s encouraging. For a lot of kids with this illness, the prognosis can be better than that for adults.
I don’t know if she is taking any “calcium channel blockers” but those are the gold standard drugs for kids with Raynaud’s. There are other options, if those fail. The key to managing these kids without meds is
to get set up with someone to review certain things with you, such as exercise (very important), skin creams, etc.... it sounds like you are on top of that.
By the way, last time you posted on here you mentioned how she likes to swim. Did you ever get her a good wet suit with gloves?
Those things can be real toasty and can possibly prevent her from experiencing painful Raynaud’s symptoms while swimming. You can get gloves made of the same material.....and some cool color schemes as well! Good wet suits aren’t cheap, but they are designed for divers to be under water for long periods of time in 30 degree water.
Like I said, I don’t know enough of the specifics about Izzy, but if you are frustrated because of a lack of a definite diagnosis, that is a pretty common problem....but that also might be a good sign.
Keep up the fight!
Edited by Bear 2017-12-23 8:59 AM
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  Neat Freak
Posts: 11216
Location: Wonderful Wyoming | I sure wish you could get this all figured out. I can't imagine. Prayers for a better 2018. Merry Christmas to your family. | |
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 Expert
Posts: 3815
Location: The best kept secret in TX | Thank you to everyone for the well wishes and the kind words.
We had a wonderful Christmas with Izzy. I've never seen her so excited for a toy (Foot Tall T-Rex).
Hope Everyone had a wonderful Christmas! | |
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