Registered: 1168995252 Posts: 70
Reply with quote #1
Annabella is just coming out of her first cycle with Zofran, it definately decreased the retching episodes and helped her get through it better, but by no means took it all away. I am very happy to have found something to help, but was wondering what people take at home during an episode for the pain of the abdomen or headache. I am quite sure she has both. Thanks!!!
__________________ Beth Annabella is 19 months old and was born with a very large portion of her esophagus missing. They grew one out of her own tissue and she is now connected and has a fundoplication. She also had a laryngeal cleft repair. She has a g-j tube. She has been diagnosed with CVS.
Registered: 1167350796 Posts: 19
Reply with quote #2
My son takes zofran at home. They have the pill that melts under the tongue! Nothing worse then trying to take a pill when you want to vomit.
Registered: 1161273611 Posts: 186
Reply with quote #3
We take compazine since insurance won't pay for zofran...when Jake is in an eposide, he only has stomach pain right before he vomits, and than it feels better until he needs to get sick again, there is nothing I can do for that, he just needs to vomit in order for it to go away.
Have you gone to see Dr F yet?
Jake, 7 years old, Had Fundo surgery with g-tube, Roux-en-Y surgery for the new J-tube now only J-tube feed, Manometry showed Vagal Nerve Damage & Chronic Intestinal Pseudo-obstruction of small intestine Severe hypomtility of stomach, Botox Injections to his stomach for chronic vomiting and DX with Cyclic Vomiting Syndrome in Sept of 06. Had a Port-A-Cath line placed on 12/22/06 due to 2 weeks cycles. Currently on 12 hour TPN due to a small bowel obstruction
To read about Jake's Journey with CVS, click here: