Hi! My daughter was diagnosed with cvs by one of her doctors. Another doctors say she doesn't have it because she has liver disease (Autoimmune Hepatitis...
Jamie said she's nauseous every day. She's 29, and the episodes hae ben more mild in the last few years than they used to be. Not sure if it gets worse as an...
Well, in our case specifically, I passed the migraines down to our son, who
has a severe variant of CVS. Dr. Li calls it a Sato variant I believe,
whatever...
It sounds like she has cvs to me. the problem is there are very few doctors who know how to treat CVS. I have had it for 16 years now and im now 29. I can...
Ive never posted anything anywhere so bear with me please!! Quick history(as quick as I can make it) My daughter started vomiting episodes when she was about 3...
Hello, I'm brand new to this group... I have a little girl who will be 8 in 7 days - she is extremely medically fragile, which a huge medical history,...
Hello, I'm sorry to hear of your daughter's health problems. Poor girl sure does go
through a lot. I wanted to answer your question about possibly seeing Dr....
Kristine, Thank you for replying and for sharing with me! I've been praying for wisdom about this decision, and things seem to be pointing toward GOing. I'm...
I was so happy to have a quick reply, that I forgot to answer your questions! lol No, we don't have a protocal from Dr Li - the farthest we've gottne so far is...
We're desperate! Emmie has been vomiting every 1-2 DAYS since we've been home from the hospital! The Topomax preventative is causing terrible neuro side...
Oh I'm so sorry! Can you get her pediatrician to prescribe Zofran or
Ondansetron for her right away? Can you take her in to be seen, and then ask
for something...
Hi Kim, Please go back thru all the previous e-mails and data base including several years back. My daughter's life was turned around when she started using...
To respond to the Zofran idea... this IS what we use when she is hospitalized. However, the docs told me its only IV or IM ... how do you guys give it at...
Your physician should prescribe it and it should be used before the person is sick. Meaning when there is a sign of something not right happening (some...
Zofran, or the generic Ondansetron, is given at home in an orally
disintegrating tablet. It melts on their tongue. We give 8mg every 4-6 hours Kristine *Ü* ...
took all day for neuro to return my 5 phone calls.. they decided to stop the Topomax and start phenobarb for prevention, and they've also stopped the compazine...
took all day for neuro to return my 5 phone calls.. they decided to stop the Topomax and start phenobarb for prevention, and they've also stopped the compazine...
I have never heard of phenobarb for prevention. Zofran has been the drug of choice but I don't know what is recommended during vomiting other than IV or IM...
Aww man... I was afraid you'd say that! ARGH!!! Zofran has been used as rescue measure while in the hospital, but it never seemed to work - although we keep...
Good luck with that. My daugher has been symptom free for about 2 years so I am a bit out of the loop on new things. Was the Zofran given IV? Please read...
So sorry about all you've been going through.... Just wanted to share we did try the Fenergan once I believe (rectally?) and it put my son out-- (in this way...
Turns out the reason they stopped compazine is because the rectal suppository they gave her was a dose 5 times the recommended dose! Now I'm talking with...
We have also tried Topamax for Sarah , my 10 yr old twin girl who has it and it also had neurological symptoms that made her seem totally out of it ,...
My son has adult CVS. He took Compazine once and started seizing. The only thing that works is Phenergan via IV fluids and then follow up treatment at home...
I am an adult sufferer too - and the compazine gave me adverse effects as well. Phenegran does nothing to my attacks. Here is my personal regimine : 1 Lexapro...
Our 17 year old daughter has not had to be hospitalized for over one year now and has been mostly symptom free as well. She started taking CO Q 10 and...
When she starts feeling bad, give a dose of Zofran RIGHT AWAY -- it takes 15-20 min for the oral tablets to work, Jamie needs 2-3 8mg tablets when she takes a...
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