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momw/scoli
06-07-2009, 09:47 PM
My daughter Emily had surgery 5-28-09. Everything was going well the second day after surgery and then she started becoming having nausea, a rash, and throw ups. I thought it was because of the narcotics, but after an upper GI we found out she has SMA syndrome which made the tube leading into her small intestine smaller when her spine was staightened. We seemed to have the nausea under control after we found out what was wrong and she came home on Friday. Yesterday she threw up before breakfast and then she seemed fine the rest of the day eating breakfast casserole, sloppy joes, and cereal. Today she has had nausea all day, but she is eating. She weighed 118 and was 5'6" before surgery. She is thin, but they weighed her in the hospital and she had only lost a pound. Has anyone else had this syndrome and how long did it take to get over it? Should I make her eat every two hours even at night? She seems to wake up feeling sick after sleeping all night and it gets better during the day. I looked up this syndrome online and it's really scarey. I don't want her back in the hospital!
Becky

Scrapnladybug
06-07-2009, 11:06 PM
No advice but I hope you get some answers, and that Emily feels better soon:)

Sherie
06-08-2009, 04:27 PM
Hi Becky

I'm sorry to hear about your daughter. Did the doctor say why she has a rash along with these other symptoms? That seems to be an odd symptom for a gastrointestinal disorder.

Have you taken your daughter to a specialist, such as a doctor of internal medicine?

momw/scoli
06-08-2009, 06:57 PM
Sherie, Yes, she saw a specialist while she was in the hospital. Our ortho suspected SMA syndrome and ordered an upper GI and a consult with a Dr. that specializes in internal medicine. He just said she needs to gain some weight and it should disappear. Emily is thin, but I never thought she was so thin something like this would happen. She has had a much better day. I am making her eat small amounts all day long. I think she will eat more after she gets to stop taking the darvocet. They think the rash was caused by vicotin so they switched narcotics and the rash went away. The good news is the surgery went well and she didn't need a blood transfusion. We don't know how much correction she has because of the upper GI. We have to wait until her three week check to take an xray. I can't wait to see what happened! I know she is going to be okay, I just freaked out a little when I looked up SMA syndrome on the internet and it shows the worst cases. My baby just needs to gain weight. It's a good thing she likes ice cream. You should have seen how much she ate the day before surgery! It's not like she doesn't like to eat so it shouldn't be too much of a problem once we get past the first few weeks. I was just wondering if anyone else had to deal with SMA syndrome.

Becky
Mom to Emily
Surgery 5-28-09
T2 to T11
Curves T51 and L42 Now ? (Waiting and Wondering!!)

Sherie
06-08-2009, 10:10 PM
Good, glad to hear she's feeling better today. Sheena's pretty thin too but she didn't have those kinds of symptoms. I think she lost about 8 lbs, 5 of that during her hospital stay. It took her several months to put it all back on. I think you're right, once they stop the prescription meds, they start eating more.

take care~