Hello, I have come here hoping to find some answers for what I have been experiencing. CVS was recently discussed on another message board I am on and it was...
I'm the mother of a CVSer- so I don't know first-hand- but it does sound like CVS to me- (stress, fatigue etc. are known to trigger episodes)- you might want...
Thank you so much! Debbie David15 months, 15 % Pancreatectomy 11/7/08, No Meds , Washington Rebecca Age 11, no HI Lily Age 5 , no HI Anna Age 4, no HI To:...
Hi my daughter has CVS and I am told it is the worst case ever and was wondering or looking for other parents to talk to about this my daugher is 7 years old...
You can talk to us here, or email me at mama4jesus@.... This is a
supportive group to get answers from. Dr. Li said my son has one of the
worst cases...
Sorry to hear about your daughter... You may find help here, but I also suggest you check out www.cvsaonline.org for a message board and additional support!...
I do not know of a chat room but you are welcome to ask your questions here as there are many people here who could help you. It is nice to get different...
Hi listers, I have an 11 year old son with autism, and CVS. Had 5 rounds of undiagnosed CVS between 2-6, then nothing until last October 2008. Summer 2008 he...
We are from Wisconsin. This started oct. 2008 for what reason we dont know but has been a long going thing since then and thye dont know why. Dr.Li digonised...
Your daughter's cycles sound very similar to my son's in the regular intervals (we are now up to 7 to 8 weeks, but used to be 5 weeks some years ago between...
Cindy, I'm wondering why they started a PICC line, and who ordered that? Was
it Dr. Li? I can't even begin to tell you how long I've been begging Devin's
GI...
Well you are right enjoy what we can. Dr. Li is the one who requested the PICC line when we went doen to Milwaukee back in febuary and it had done wonders for...
Yes we are lucky to have been in to see Dr.li and have him dignosis her with the CVS, but without Dr. Park in marshfield helping when he can and being the...
Devin does have a port (like a PICC line, but it was surgically implanted
into his chest wall and stays under the skin. It is accessed by a special
needle),...
I think it was 10 something so could be D10 that she maybe getting but I like the PICC line but they are pushing for us to do the portacath. I would push as...
Missy - My son takes amitriptyline for headaches/migraines. It is an old medication used for depression and other things. With this said, it is a brain...
Cindy - I am sorry you are having to go through this. CVS is really difficult to deal with. My son has had CVS since he was 18 months old but he didn't have...
Kristine - CVS is a horrible monster to deal with. Is your son on any daily meds or meds at home for his episodes? Just wondering... My DS and DD have been...
Oh my goodness! Please get her that Port-A-Cath! I can't even tell you how
much easier her life will be with that. I promise you it won't take anything
away...
Hi there, in reading some of the recent posts, I've seen "D5" and "D10" (I think it was) referenced as being given via IV. Could I ask what those are? (I try...
D5 and D10 are fluids with dextrose, or sugar in them. I can't explain the
science behind using them, but all I know is that Dr. Li recommends D10 with
the...
Hi Terry, Yes, Devin is on daily meds, but they don't work very well to control his
episodes. He is on; Prevacid solutabs 30mg twice a day Amitriptyline 30mg...
when I first read the article in Teen cosmo years ago I was convinced I had CVS, none of the doctors new what I was talking about and thought i didn't...
I have a daughter not a son but yes ahe is on meds daily.....prevacid, amitriptline and propranlol ________________________________ From: ohgr8nowwhat...
You may have already mentioned, but how frequent are your child's cycles? We've done without hospitalization and IV's but I'm guessing his cycles would end...
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