I have a 5 year old girl , Sarah who was recently diagnosed with
CVS after the onset when she was 6 mos old . She is an identical
twin , the other does not have it . She has an episode every
month , like clockwork for 3 days duration. A typical episode
consists of the first day she wakes up with it usually 4 or 5 am ,
will vomit throughout the morning every 5 min. or so till about 11
am when it spontaneously resolves then she is fine the rest of the
day. With the episode , she is photosensitive , has "head spinning"
(her words), cant walk well, is sometimes tremulous, sometimes has
headache, and is lethargic. The next day , she will wake up early
with it again with full blown symptoms all day . The last day is
her recovery day where she will be better but will hold her head
still all day , sometimes cocked at an angle , will have her eyes
squinty and has periods of head spinning , especially with fast
movement. After this , she is fine the rest of the month , like
nothing ever happened. She has been on periactin, propranolol,
topamax, diamox with no results. She currently takes carnitor daily
and Zofran at the time of an episode which has helped the vomiting
at least. She also has fiorcet as needed. I understand that maybe
she may outgrow it someday or it will turn into migraines only but I
cant picture it going away at this point. It is now affecting
school for her obviously in days missed . I have heard about diets
that can help but I dont know which hi fat , low fat , or hi
starch , lo starch . Any info would be helpful plus I would love to
hear from someone in the Hudson Valley area of NY with it or
similiar cases to my child.....Thanks...