I'm with you on the school. My daughter's high school said they couldn't kick her out but said they would not offer any assistance in getting her through her...
Sam also has a learning disability and need extra help on top of the whole CVS thing. It is hard enough to fight for his extra help let alone the medical...
I banned the author of the recent SPAM messages and deleted all of her messages. I'm sorry I did not act sooner, but I have been off my computer for several...
Ann, We have been homeschooling 11 years now. Our oldest, age 16, has CVS. It is undoubtedly the best thing for her. I don't know where you live, but there...
I have a 12 year old daughter who has had cyclic vomiting for 7 years now. No medicine seems to work. The episode always last over 36 hours. And it seems to...
Carolyn, Have you and your doctors tried D10 glucose solution in your dd's IV when she is in the hospital? That really helped stop the cycle in the hospital...
That is very helpful. We see a Dr. down in Stanford once every 6 months (a good 3 1/2 hour drive or more). Well maybe I should go a few more miles. They...
Carolyn, I would strongly recommend finding a new doctor for your daughter. I know from experience that the treatment she is getting is dangerous. Severe...
Carolyn, Unfortunately the docs in this case are missing the point because so what if your dd has only lost 2 pounds?!! You need to find a doctor who has...
Carolyn - My children's GI Dr. is 1.5 hours away. He comes to our town once a week now!! Anyway, three episodes ago, we had to take my son to the ER because...
Carolyn - When both my children have CVS episodes, they both start with vomitting bile. I would be seriously concerned if there was blood in it. My heart...
Mary - I have heard several people on this group talk about the CO Q10 and L- Carnitine. Are these supplements or presc.? What do these do for your child? I...
Ann - I have been homeschooling my kiddos for 5 years now. I cannot even imagine having to deal with the school system when they have an episode. I am...
I agree a specialist should be consulted, but I just wanted to add that my son always vomits blood (usually dark brown)-- our specialist says it is from...
Terry, CO Q10 is a supplement that you can get online, but you need to have your doctor tell you which dosage to use. Dr. Fleisher recommends that we get it...
I want to thank everyone for their notes and ideas this hopefully will make my daughter and my life easier and more understanding to other people. I've...
Carolyn, The schools won't always listen to the parents when you tell them what is going on with your child. My son had been in and out of the hospital 5...
Terry, Dr. Richard Boles believes that cvs is a Mitochondrial disorder. The D10 gives you energy. So when my ds was in the hospital, the staff would put the...
The school should have listened. They have no right to not listen to a responsible parent. I was a teacher and saw this happen before. Someone should take...
Susan - Thanks for replying to me. I appreciate all the info. I can get. I have two children with CVS. My 10yo ds is moderate to severe and my 7yo dd is...
hello..my name is Sherry..I have two kids..5 and 8...my 5 yr old has just been diagnosed with CVS. I could really use some advise from other families with kids...
Sherry, First off I am so sorry your child has been suffering so much. CVS is a stressful dx. My daughter was dx in 2005 after 2 seperate episodes. She is...
i see its kinda quite on here. i will have something to report soon i hope. things have been going well so far. i will give full details once we (my lil girl)...
Was realllly hoping for more moms out there to talk to...are we all checkin in here..to see if there are any new messages...but very busy withthe kids...and...
Sherry, Most people go to the cvsaonline.org site because they have a message board that is probably what you are looking for. There is a membership fee and I...
Sherry, I also noticed how quiet it is. I haven't been with the group for too long. I would be happy to contribute what I can. I just don't know too much...
My 4 year old was just diagnosied with CVS a couple of weeks ago after months of on going testing and treating him for problems that he didnt even have. He's...
Heather, I am sorry to hear about your little one. My son is 6 and has had this for forever. This is what I have done and have been successful at aborting any...
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