Here is info that I wrote up for http://cvsaonline.org/, for their newsletter.
My CVS’r has a variant case of Cyclic Vomiting Syndrome and agreed to be a case study for UCSF to keep other kids from going through what he had experienced.
We were introduced to DHE, as a treatment option, during a follow-up appointment for one of our longest Hospital stays caused by CVS. As the episodes were growing in frequency and severity, the treatment options were changing as well. We had exhausted most typical options for treatments of CVS. Sometimes causing the doctors to wonder if what was going on was indeed CVS. But, in the world of rare, we were pushing the limits. The doctors opted to get, “aggressive and experimental” in the treatment they were using to treat my CVS’r with.
With the next episode starting less than two months after our 17 week long one, an infusion of DHE was scheduled. We didn’t know what to expect other than we would sit in the hospital for 5 days. They did mention that there is severe nausea associated with DHE. That made us laugh. We had just had 17 weeks of vomiting that had required daily IV infusions, Emergency room visits, and several hospital stays. We didn’t believe that the doctors would even mention this knowing that we were going into the hospital already vomiting. Nausea and increased Vomiting wasn’t something we were worried about. We had already been to the Edge of too much and back. However, the effectiveness of the DHE is affected by how well the nausea is controlled. This ended up being where we found the only medication that can control the nausea of our CVS’r. He went in to the infusion vomiting and came out 5 days later, not. Granted they can combine them with other meds that you can’t get outside of the hospital. But, Zofran was only cutting the amount of times he was vomiting in half.
Stuff to know about DHE and the process.
Dhe has Nausea (severe) as a side effect, but that is usually controlled for the effectiveness of the infusion. Muscle Cramping is another. That typically set in around day three and you can not have any other type of medication for that unpleasantness. The only remedy is to walk and walk a lot. The typical method for giving the DHE infusion is using a PICC line. Although, we had a PICC line prior to our first infusion and opted to have Multiple IV’s instead (But we had to Fight due to adhesive allergies. The adhesive allergy was also why we didn’t want the PICC line). The multiple IV’s have to be put in prior to administration of the DHE as it does constrict the blood vessels and makes getting a line later harder. There is a schedule of infusions and isn’t much different than a typical IV.
What it has meant to us.
Can you imagine a day without head or abdominal pain? Do you know if you child ever has? I think I cried the first time they asked my CVS’r his pain score and he said, “Zero.” Or the day he came to me and said, “I can’t remember the last time that my head didn’t hurt.”
Now imagine making it six-months or more. That is what DHE has done for us. Our last vomiting episode was November 2013. We have had 3 infusions of DHE now and each time we get an infusion we can track habits and scores and know when he needs to go in for a “tune-up” infusion. Just like the typical CVS, we can tell when he is getting ready for an episode. But this was a first for us. We had not previously been able to track the episodes. DHE has made living with CVS, night and day. We finally feel like we have some kind of control over it or at the very least, we are learning more about the medications that help my CVS’r live with it. Because that is what he can finally do, Live!