Cyclic Vomiting Syndrome Message Board
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Reply with quote  #1 
I was diagnosed with CVS back in 2012. Since then I have had good times and bad times. Recently I have been losing weight and just wasting away. I am down to 110lbs (I haven’t weight that much since middle school, I’m 29yrs old) but usually weigh anywhere from 135-140. My family Dr doesn’t really know what else to do to help me keep weight on so I am going to see a specialist in October. Does anyone else have problems keeping weight on?

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Reply with quote  #2 
My son did when his CVS was uncontrolled, or more aptly, he wasn't being treated with meds that worked for him. He ended up with both a PICC line and what he calls a Nose hose or NJ tube. 

I would suggest a couple things. Depending on the meds you are using, some used meds to treat CVS can have the side effects of weight gain. If your doctor is sympathetic and willing to learn, he can consult with the medical advisors. Which is the second thing I would suggest. If you haven't gotten a specialist from our referral list, that would be a good idea. 

My son lost a ton of weight. At one point, his calorie intake was 8,000 a day.. and was strictly monitored. That was in addition to the high calorie feeds he was getting via his feeding tube.  Has you doctor expressed concern for your weight loss? Ours brought in a nutritionist.

Is it your CVS that is making it hard for you to keep weight on? If that is the case, I would see about altering or upping meds to try to get it regulated. 

But, there are nutrition options that your care provider should be able to suggest or help you decide what is best for you. TPN, Feeding Tubes etc.

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