I am the mom of a 14 year old boy who after reading some of the posts here, I'm sure has CVS. A pediatrician mentioned abdominal migraines years ago, but...
Hi All - My DS just had appointments with the Neurologist and Gastrologist. The Neurologist is leaning towards CVS. They have given him a prescription for a...
Just an FYI to think about, as you are in the "ruling out" phase. If indeed your children do have Ehlers-Danlos, I would suggest that you discuss with their...
I didn't see you mention Zofran. This anti-nausea product used the minute any feeling of "not normal" occurs has been a godsend to many. It is very expensive...
Ann - My 8yo DS has been prescribed Phenergan Suppositories. I feel so bad for the guy. I think it is humiliating but he doesn't seem to mind especially when...
Zofran is best used as a propholactic prior to the event. My daugher uses them the minute she feels "off". (Doesn't work too well once the event starts) It...
Is there a contact person you could e-mail and ask about the list? I think they term it consultants or board members. I haven't been on the website lately. ...
I found my list, but it is dated 2003. I will still send it if you can't get a more current list. mamatlc2000 <MamaTLC@...> wrote:Ann - Where can I find...
I am a 49 year old female who has suffered with CVS since my mid teens. I have episodes approximently every 4 to 8 weeks, uasally starting 1 to 2 hours after...
Hey everyone...I'm pretty new to this group. I have been throwing up unvoluntarily since Oct. 15, 2003. One doctor said that I meet the criteria for CVS,...
My daughter was put on Elavil 30 mg a day, and she hasn't had an episode since Dec. She is only 9 and weighs about 70 pounds, so I am sure the dosage would...
My CVS was pretty chronic for a while- about 8 months. I hace sevre reflux so for that I take 30 mg. Prevacid ODT, 60 Mg. Famotidine, 25 MG Elavil (Im going to...
Success for my daughter after a visit to the Mayo clinic included low fat diet (no fast food that have been deep fried or anything else deep fried), high...
I take .05 mg of clonipin and there is also clonipin wafers which go under the tounge and disolve so you dont need water i find that those work great. Use them...
The doctor is right you dont need the zofran. Takes to long to work anyways. There are 3 medications that i take as needed they are. .05 mg of clonipins 2...
I smoke marijauana to help with my symptoms. I would like to try marinol but I don't know of a doctor who will prescribe it for me, my doctor laughed at me...
Hello my name is Jennifer and I am 35 yrs old. I have had CVS for about 4 yrs I use to feel sick everyday around 2-4 in the morning after about 6 months the...
I has thought for a while this is what my son had but it took a while to get through all of the doctor to one that said this is what it was. My son is 3 almost...
Hi April, sorry to hear about your son! My daughter has CVS (5yrs old). She gets episodes like clockwork every 7wks. Prior to this, she was diagnosed with...
Hello! I just had a question, what do others on this list think about the excessive vomiting and teeth issues? I am getting increasingly concerned about my...
My 7 yr old daughter , Sarah has had CVS since she was 6 mo's old , every 5 weeks like clockwork....vomiting 40 to 50 times a day prior to Zofran which cuts it...
my little girl also has cvs and has had it since the age of 6 months. She also has problems with her teeth due to the bile. But her pediatrician says that due...
Thanks for that. I think you are right, it will be too hard for her to rinse her mouth during an episode. Imogen also sips water during the episode, which...
Interesting! I agree, at least they are the baby teeth, but you need to protect the baby teeth so that the new teeth grow in correctly, that is why I was...
my little girl will be four in October. I have my little girl drink water inbetween spells. The only teeth that have been affected so far by the cvs are her...
Thanks for this! I also have my daughter drink sips of water between vomits. I have noticed her front two teeth are not looking 100%, but am assuming she...
Jen, Zofran works best given as soon as you see symptoms that your daughter is going into a cycle. It could even abort the cycle. Possibly. I have no...
Jennifer thanks for your reply Now that I think about it my son yawns a lot to right before he gets sick. I never realy conected the two but now that you had...
Zofran has been a godsend for my son with CVS also. He's an adult and takes the 8 mg dissolvable tablet and usually takes 2 of them at a time but he's a very...
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