L has her good days and her bad days. Her Cyclic Vomiting Syndrome was confirmed again by her Neurologist. He has her on the Zofran when it hits, which is about once every 2-4 weeks. It's always at night. Usually, she will not eat for about 3 days after so she will drink Gatorade and Ensure. After about 3 days, she will slowly get back to eating regular food. If it gets worse, she will have to go on daily medication.
A new symptom that has come up is hives/rash every time her body is under stress. It itches and is painful. It's splotchy and little bumps. Usually Benedryl or Hydroxyzine will clear it up.. Right now she's on Predisone because nothing was giving her relief. Sometimes we have to use the steroids but her pediatrician is trying not to put her on them too much. We aren't sure if they are hives or an autonomic rash. We have an appointment at Duke with a Ped. Dermatologist but we may be heading to Atlanta to see a Mitochondrial specialist there. We are still trying to get things set up and make decisions. Here is a picture of the rash...
L is has also been experiencing slow motility these past few months. We are trying a few things like Miralax but we aren't getting great results. The slow motility is causing a distended stomach and lots of other issues. I am going to talk with her pediatrician next time I take her in. That may be tomorrow because she has developed an awful cough that is not getting better.
I will try to get better at updating. Life has gotten so busy but hopefully the summer will calm it down a bit.
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