Daughter with PSC and possibly Cyclical Vomiting Syndrome

July 12, 2008

Hi! My daughter (10yrs old) has AIH/PSC overlape. Her AIH is

not active (yeah!)She also has portal hypertension. She has not grown

in the last two years because of Imuran and Prednisone. She has

been having (two years ago) episodes of vomiting uncontrollably,

there is no rhyme or reason to when it happens. In between episodes,

she feels exhausted and slightly nauseated. Some episodes come once a

week, sometimes once every 3 to 4 weeks. The peds gastro doc said she

has Cyclic vomiting syndrome. Her pediatrician said she does not fit

the profile of CVS. Kids with CVS in between episodes feel great. He

thinks it has to do with her liver. Now her episodes come every 4 to

6 months and she doesn't vomit but feels like she is,but she gets

such bad upper stomach pain we take her to emergency and they end up

giving her morphine. She takes Zofran for the nausea. Most of the

time (but amazingly not the last 4 episodes) she gets a fever after

and diarrhea.

I was reading some of the post on this forum about some of you

getting chronic nausea and upper stomach pain. Is it possible she is

having a cholangitis attack instead of CVS? Can a cholangitis attack

happen this often? In the last month, she has felt the best and is

out playing everyday. Her liver function numbers have been normal so

she is probably either going to be taken off of the prednisone or

take it every other day. The nausea and pain usually happen when she

is having problems with her bowels. So I try to get Miralax in her

every day. Oh, she is also on a high dose of Urso (3 capsules a day).

Also, I have to mention her spleen is very enlarged. It has been for

the last two years. With her not growing, her organs are growing but

there is no room. She saw an endocrinologist and will be starting

hormone growth therapy very soon.

Does anyone have any thoughts or insight regarding this?????

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