Sorry to hear about the CVS diagnosis. We were spending about three days every six months in the hospital for dehydration. At one point his face looked like a sunken skull, and that happened in a matter of minutes.
We have found that suppositories are the only thing that works. We try to catch it as early as possible. The suppository keeps him from vomiting until he is ready to take liquids again. He is usually out cold for most of the day. We are hoping it won’t turn in to migraines when he hits the teen years.
It took a few months to diagnose. We went the hospital / dehydration route as well. She currently takes two, 4mg cyproheptadines at night. This controls things most of the time. We also have some dissolve under the tongue ondansetron - 4mg for when things get bad and she’s going to have an episode. It’s such a bizarre condition. We too are hoping she outgrows it.