direction for help with cyclic vomiting syndrome

[JanaWhit]

Hi.  My 9-year old daughter has been struggling with bouts of abdominal pain and severe vomiting for the past year.  She has had an upper G.I., upper endoscopy, MRI of her brain, EEG, ultrasound of abdomen and kidneys, CT scan, bloodwork on cortisol levels - all with completely normal results.  She's been hospitalized 4 times for dehydration and pain management, with morphine being what helps the most.  She has been diagnosed with cyclic vomiting syndrome by a pediatric neurologist at University of Virginia, and has been taking amitriptyline (now at 35 mg) and recently started on periactin (4mg).  When the episodes start, we give her Imitrex nasal spray, Lortab for pain and Zofran for nausea until the vomiting prevents her from taking meds orally.  Unfortunately, she still has these episodes every 7 weeks or so.

I need suggestions.  Can you help?  Thanks so much.  Rebekah's an incredibly strong kid who is dealing with this when it comes, and is completely healthy and active in between these episodes.  We just want them to stop.

[claudiabogarte]

1-get a food allergy profile
2-try seizure medication or see a neurologist (cyclic vomiting syndrome means you are having abdominal seizures)
3-don't give up, I am twenty seven and have had this problem since I was fourteen and can promise that even though it is a long hard road there is a path
4-one drug that really helped me that I am about to try again is lamictal or some other spelling not sure how it's spelled ;-) But when I took this medication several years ago I remember that while I was on it I could drink alcohol, I could eat out at restaurants, and I hardly EVER had attacks.....where as now I can't do any of the above.
Just remember to keep your head up and to keep fighting because it's your life to live and only you can make it great, the doctors will not come to you
5-and one last suggestion, DO NOT GIVE UP if you can't get doctors to listen, eventually...SOMEONE WILL ;-)

[dannyhyche]

My 18 year old sister is also suffering from this and we are in need of help. She has also had all the same tests and more. Also had her Gall Bladder removed and it didn't help. She has been to the hospital MANY times over the past 9 months. Any help anyone could give would be greatly appreciated.