Hi All - My 8yo ds just had an episode. I was able to catch it in time. I gave him the nose spray and phenargen. He was able to sleep through it. When he...
Hi I am a the parent of a young adult with CVS and a member of the cvsa sponsored message board. I just tripped over this forum. If you are not also reading...
Hi would just like to say a few words about this Our son Gary is 11 years old and has a severe episode about 8 week's which put's him in hospital on a drip for...
Thanks so much Ginny for that information. I have a big 27 year old son with Tourette's syndrome and CVS and would really appreciate dosage info on these two...
My information suggest a dose of -- but each individual should be treated under the care of their own physician: Carnitor 100 mg/kg/day, divided into 2 or 3...
I just pulled up an old paper about TS and CVS, if you send me your email address I will dig out the paper and zap it to you. coQ10 seems to be amazing stuff....
I forgot to say anything about the abdominal pain. If he is having the pain, he might have abdominal migraine which incluudes intense debilitating abdominal...
Not sure if cvs is what my son has sure sounds like it. We at one time thought it was this his pediationthought it might be but not sure. His last realy bad...
My name is Hillary Rhoades, I have a 3 year old daughter named Kylie who has been diagnosed with Cyclic Vomiting. She first started showing symptoms when she...
I am glad to see some one else that posted on here I had posted for the first time a couple of days ago and had not seen any one else responed. My son is also...
We went to see a gastroenterologist at Boston Childrens Hospital. Her name is Doctor Tully. before we were recommended to BCH we went to Maine Medical Center,...
thanks for replying my son sodium levels dropped so much one time he had seziors and that is when we got the sodium diagnoses but i realy dought that is what...
Hi All - I have DR. appointments for my kiddos at Denver Children's Hospital on May 6. I am really hoping we can figure out what is going on and get them some...
Good luck...I will as I'm sure we all will be praying for you all. mamatlc2000 <MamaTLC@...> wrote: Hi All - I have DR. appointments for my kiddos at...
Dear hillary, Hi my name is Melody and I have a 12 year old son named Wayne and he has what doctors believe to be cvs.I also had never heard of this until we...
Hi Everyone, I am the mother of a 31 yr old daughter who has suffered from CVS for approx. 5 yrs. Our life turned around when we visited a CVS specialist at...
Ann, do you remember the names of any of the doctors that your daughter saw in Scottsdale? My son is 27 and has had CVS for 5 years next October. We also...
Hi Melody and Hillary. I'm finding it very interesting that more and more children are getting diagnosed with CVS during hospital stays. It seems as though...
Yes, she saw Dr. Olden. She had Blue Cross and requested coverage to see him and was denied. After seeing him and him sending a letter they paid for his...
No, she takes only prevacid. Her doctors took her off of the Zofran, because it didnt work for her. It was hard for us to get a diagnosis for my daughter. It...
HI Deana I responded to your email. If it does not get through plesae let me know. Also please let me know if there is additional information I can send. ...
My 9 yr old daughter has had cvs since birth. She was misdiagnosed at 6 mos. They said she had reflux. By the time she was 4 she was having episodes atleast...
Good for you. You might want to try cutting out MSG (monosodium glutamate) and sodium nitrates too. That's your soups, bacon, and hotdogs, some cereals, etc. ...
My daughter has been having episodes every 4 weeks since she was 6 months old. She has been in and out of the hospital more than any toher child I know. It is...
Susan - I figured this out with my son as well (long car rides and positive stress). I also figured out if I do not give my son any dairy before a long trip,...
I still find it hard to believe that anything works to help this damned illness.....my daughter Sarah who is now 7 has had it every 5 weeks since she was 6...
Our situation is very similar! Also on 5 week schedule, with the same pre-day; full day or two or more; and one recovery day-- The longest ever between cycles...
My Daughter 2 years and 3 months has just been diagnosed with cvs. it started on her 1 birthday! But we now know what it is at least. It reoccurs every 4-6...
My daughter will vomit the first few times what she has eaten the night before but then it turns to yellow bile and that is what it stays....I am always amazed...
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