My 21 year old daughter has gastroparesisi and IBS. She has seen a new GI Dr. who would like her to join a clinical trial group he has using Dromperidol. ANy experience or thought on this would be appreciated!! Thanks
Welcome to the gastroenterology community! I have gastroparesis along with other intestinal motility disorders. What treatments has she tried before resorting to the clinical trial? Is she seeing a motility specialist?
She is seeing a special GI Doc that has lots of experience in this but is not, per se, a motility specialist. Our insurance doesnt cover out of network, and we were trying someone a little more local before going to a big university. Do you know anything about this drug? What has worked for you?
I have never heard of this drug being used as a first-line defense to treat gastroparesis. I know of this drug for its other uses, but of the many many people I know that have gastroparesis, I have never heard of a single person using it to treat gastroparesis. I would recommend that she talk to a doctor about trying more standard treatments for gastroparesis before resorting to this drug. Things like Reglan and Domperidone (although it is not FDA approved in the US) are the most common drugs used to treat gastroparesis. I've tried almost every medication out there to treat gastroparesis and nausea. I have a GJ feeding tube, a diverting ileostomy, and a tunneled IJ central line. I am currently TPN dependent, but I have had gastroparesis for 5 years now and I am about the same age as your daughter, and I have been on many different treatments from dietary changes to medications to tube feedings to TPN.
I would recommend that your daughter join the support group http://www.****.com/groups/GutsyTeenLounge/ which is a wonderful support group for teenagers and young adults with gastroparesis and other GI motility disorders.
I too have heard of Reglan for this and Domperidone sp? Thought maybe person asking about trial had spelled Domp the wrong way. So there is another drug starting with D used for this? I would also want to be sure dr knows more about motility than average GIs-- although I have gastrop when I saw a dr who is really an expert in it I learned mine was mild compared to most and not source of my biggest issues unlike what am sorry to say you are going thru. Bear are you sure another med center is out of network? sometimes a good surprise as to what is in network.
Thank you for your input!! I believe I did mispell the trial drug. I will have my daughter check out the support group- this is such a misreable condition for such young people like yourself!! Appreciate the advice and will keep checking for options!!
So was the drug Dromperidol or Domperidone? Dromperidol (exactly the way you spelled it in your first post) is a medication that can be used as an antiemetic (helps with nausea and vomiting) but I believe it is mainly used for sedation/anesthesia. I have never heard of anyone using Dromperidol to treat gastroparesis. Domperidone is another medication that is very different from Dromperidol that is currently not FDA approved in the US but it is one of the most common medications used to treat gastroparesis.
The link I tried to post in my previous post, didn't show up correctly. The support group that I was recommending for your daughter is called the Gutsy Teen Lounge and it is a private group on facebook. If she does a facebook search for gutsy teen lounge, she can then request to join the group and will be approved into the group usually within a few hours. The support group is run by G-Pact which is a non-profit organization for people with gastroparesis and other motility disorders. They have a website and they run other support groups on facebook too for older people with gastroparesis, and for caregivers of people with gastroparesis, etc. If you let me know your daughter's first name, I'll look out for her to join to welcome her into the group.
I have had terrible IBS with bleeding/cramping exhaustion for 17 years and only started taking drugs in the last 3 years. omeprazole didn't seem to do much even at 80mg, protonix is better maybe and probiotics helped my nausea (insurance won't cover it)
now I developed hemmarhoids after years of this
I finally started dicyclomine and don't know if it helps
Thank you for all your info. We have an appt with gastro Dr who runs the domperidone trial. My daughter is "over this" and wants to try this medicaine as most of the reports say it does work. Her name is Rachel and I have told her about the support group. She will probably look into it after her college finals are done. Will keep you up to date. I admire your upbeat attitude and concern for others- thanks!
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