CEB4Dolphins
Unregistered User
(1/27/03 10:35 pm) Reply
CVS
I just wanted to reply to the question about foods to stay away from if you have CVS. Some of the major triggers I have found are caffine, foods with MSG in them, basically any foods that will trigger a migraine stay away from. I hope this helps. If you have any questions don't hesitate to ask, as I would be glad to answer any questions.
Caitlin :fish2
joshs mom
Unregistered User
(1/31/03 7:24 pm) Reply
cvs
was wondering what foods u are talking about when you mentioned anything with MSG, what does that stand for.
thanks
thank you
:angel3 Thank you for replying!
I have checked out that addie for CVS.. butsadly to say; its not helping. Today I took My daughter to another doctor. and she contradicted herself by saying that she never heard of this illness and yet that she believes that My daughter will get over it at 8! sheesh that kills Me inside....
Another negative thing a week and half ago once again she had to be admitted for 8 days. This attack was a lil different. Not only did she have a stomach migrain BUT a headmigrain as well. along with a gastroenteritis and rhinovirus! This is so bad, the docs looked helpeless cause nothing they were trying was working! What am I to do?:confused
Btw, her triggers seem to be any kind of infections and she catches everything possible! I would like to hear from people who ahve tried different meds and worked.. if anyone has anything to offer I am all ears. Thanks alot..
:weep Mom D-G
cyclic vomiting
hi charlies mommy , i have a 4 1/2 year old son who has cyclic vomiting syndrome. i would love to chat with you and compare. he started on his second birthday. he goes about 6-8 weeks between episodes. it took me about a year to figure out that his throwing up like he did was just not right. we spent a lot of time with our family dr. who i respect a lot , but just came up with nothing . i started searching around on the net and saw a cvs site. i probably hadn't gotten through the first paragraph and my jaw dropped and i knew this was what my son had. i printed out a lot of stuff and took it to my dr. she agreed but just through up her hands and told me there wasn't a lot to be done. she did look into it as she didn't know a lot and prescribed a suppository (which he refuses) to help with the vomiting. jason is always almost exactly and anywhere between the 6 and 8 weeks that i mentioned. i can always tell about 6 a.m. he tosses and turns and talks in his sleep. you can tell in his eyes when he does wake up , which isn't really waking up it is more like a semi-conscious state. he stays that way for a couple hours and starts vomiting, still in the semi-conscious state. his vomiting doesn't usually lost long but he definitely feels bad for 6 -8 hrs. then he will sleep for 3-4 hrs . and wakes up just fine. i can't stress how exactly alike these episodes are. he also is extremely thirsty and the light seems to bother him. well that is about it for now , i would love to compare notes with you , talk to you soon, lori
joshs mom
Unregistered User
(2/15/03 7:27 am) Reply
cvs
hello, my son has this, and the meds that seems to help him is an iv, dalota, not sure about the spelling ,but a real strong pain med..along with phennigan, not sure about that spelling either, but is nauesea med..with these together the last two times this has stopped the cycle.. he is 20 years old.. he is taking elmavil at night time and zanax to help him sleep..i have read where sleep is a very important with this.. if u can get them to sleep for hours, it really helps.
chopinmrl Registered User
Posts: 1
(2/27/03 12:29 am) Reply
CVS
Hi Rachel and everyone,
I have had CVS since I was little (under a year most likely). I too would like to emphasize that you can have a normal life with CVS. I am now 22 and a college senior (living 21 hours away from home). I still have episodes and I will most likely not grow out of my CVS.
I was not diagnosed until last April and since then I have have responded really well to amitryptiline (elavil). I've gone from having a fullblown episode every three weeks to only having one episode in the last year.
Growing up, no one knew what was wrong with me (even after seeing specialists all over the state) so eventually my pediatrician and I built up a list of things we did over the years to help deal with the episodes. He would stop by on his way home when I was ill and give me a shot of our anti-nausea choice of the year and benedryll. Benedryll would knock me out and if I could go to sleep I would be able to "sleep it off". Having him stop by also the amount I had to move. I also drank gatorade/tea w/sugar,warm jello (before it jelled) etc. I didn't like soft drinks. . .but I don't like them when well so it is more of a personal preference than anything else. I have since decided gatorade works best. I would drink even if I immediately threw it back up because it was better than vomiting up stomach acid and bile. It was actually better for me healthwise as well because I avoided a lot of potential damage to my teeth and esophagus. Drinking also helped me stay out of the hospital because I would keep some of it down (although it never seemed like I did when I was vomiting) so I dehydrated more slowly.
I never had problems with my school. . .they were always very supportive etc. It was hard to keep having to catch up in high school and in college in particular
cvs
hi chopinmrl, can you tell us , what it feels like when you are sick? once again i am a mother of a 4 1/2 year old and he cannot tell me what he feels like. as of today he has been the longes between episodes that he has ever been ( 11 wks.) i am obviously hoping that he is outgrowing this but am also doubtful. if you can give me some idea of what i can do to help him , i would be appreciative. thanks, lori
chopinmrl Registered User
Posts: 2
(3/13/03 4:31 pm) Reply
CVS
Hi Lori, From talking to others with CVS, I know that the symptoms, or the way one feels in an episode vary a lot from person to person. I feel no pain, I don't feel like I can swallow anything, including saliva so I basically drool a lot, don't really feel responsive to people--especially talking to people is hard, and I am terribly, and instantaneously exhausted. If I wake up in the middle of the night I can immediately tell if I'm going to have an episode because of I feel like I'm so tired that I can't move. When an episode starts, I go into an almost semiconsious zone. It's not that I can't answer questions, etc. . . but that it just takes too much energy. When I was little, I'd make it to the bath room
and then lay on the tile floor for the rest of the night because I didn't have the energy to go back to bed. . .especially when I knew that I would just have to get back up again. I don't have any pain, though it is not fun to be throwing up. . .I've definately gotten frustrated and really down when I've had series of episodes, but that was when I was older and was frustrated that no one knew what was going on. Once I go to sleep (which is hard when you're vomiting every 5 minutes), I generally wake up feeling tired, a little weak from the lack of food and the dehydration, but otherwise fine. I often crave salty foods like chips or french fries when I wake up too. I've eaten pizza 5 hours after coming home from the hospital from an episode and felt fine. It's very different from a stomach bug and if your kids ask for something - coke, chips, etc that doesn't seem like a normal thing to eat after they've been vomiting, I'd let them give it a try.
chopinmrl Registered User
Posts: 3
(3/13/03 4:46 pm) Reply
CVS-things that help
A couple of things help when I'm in an episode. I stay in bed with my room relatively dark (I usually leave the closet light on so I can see to find my trash can/kleenex/etc) because bright lights and moving makes me feel worse. I take a trash can to bed with me if I'm having and episode and cover my pillow with a towel (which can be easily changed if I miss the trash can or drool). This system lets me relax more because I don't have to be worried of being ready to jump up and run for the bathroom or afraid of something happening if I start to drift off to sleep. The biggest thing that helps is that I drink a lot of gatorade. I'm really thirsty during the episode and even though I immediately vomit it back up, drinking helps. Gatorade/Powerade is my drink of choice when sick because it stays down the best for me. The reasons for drinking are mainly that I'm going to vomit either way so I might as well dilute the stomach acid so I don't ruin my esophagus and teeth and even if I vomit it back up immediately, a little will stay down and that keeps me from having to go to the hospital for an IV. I don't drink a lot though-just a couple of sips or swallows after each time I throw up. I also take benedryll (liquid), I try to keep it down 20 minutes but if not, I just take another dose minus whatever I think might have stayed down. Benedryll helps because it reduces the mucus and the saliva and it makes me sleepy. Even when I was hospitalized, benedyll in the IV was much more effective than phenigran. Now I take zophran (in the pill form that dissolve quickly on your tongue) if I feel like I'm going to have an episode and that has helped a lot. I don't know how old you have to be to take it though. Other than that I like to be left alone as much as possible. . .when I still lived at home there was a bell beside my bed that I would ring if I needed anything and my parents would come to check on me periodically but I always knew they'd come if I rang the bell. I've also heard some people like to take baths or showers but that sounds hellish to me;however you might offer them the option if you think they'd like one.
chopinmrl Registered User
Posts: 4
(3/13/03 5:02 pm) Reply
Last few remarks
I just wanted to say that I don't really remember being sick after the episode-I had thousands of episodes so I can describe them fairly well but for a long time all I could say was that I just had to throw up. For me it really is like I am only partially conscious. The worst part of a lot of my episodes when I was little was when the nurse took the iv OUT. I didn't remember them putting it in or if I did, I remembered it as an action, not as a needle stick. I think a lot of the time it is worse for the people who have to watch me in an episode than for me. I know it's going to stop, I might be frustrated that I'm sick again but the hardest part for me was seeing how much it scared my parents (and now my fiance). However, after a while, everyone got used to it. We had our drill and it was still annoying and inconvient and I do feel awful during the episdoes; however, I don't remember the feeling of feeling awful during episodes the way I remember feeling when I had food poisoning or when I broke my ankle. Once I stop vomiting and have slept, I feel perfectly fine or at most just tired from the lack of food, water, and sleep--it's almost like the episode didn't really happen except that everyone else's life didn't stop so I have to catch up. If you have any specific questions I'd be more than happy to answer them.
wow , what great detail . thanks, it is so helpful to me . everything you said seems to apply to jason. he is soooo thirsty and i hesitate to give it to him knowing it will come right up . i will try to be better with that ,although at four , i am the one catching it. he does seem desperate for anything to drink. he definitely is semi conscious thru it all . and definitely complains if it is bright in the room. i do think he has some stomach pain and it seems to be sharp.and when it is over , it is over and i can't get enough food for him and quick enough .he seems starving . i was wondering how healthy you are in between episodes. jason seems to be a really healthy kid otherwise. do you have headaches? how about car sickness or motion sickness ? do you know of anyone who has outgrown this? wouldn't that be great .
do you think anything triggers these episodes? i just can't really find anything that triggers jason to have one. i really appreciate your time with this, i know i will have more questions as i think of them .
joshs mom
Unregistered User
(3/16/03 9:04 am) Reply
cvs and getting health insureance
hello, was wondering if u could give me some information on how to get some health insurance with this condition,
when son first got this, he was going to college and was covered under our insurance..he has since had to drop out. and where he works does not carry insurance even those when he started they told him in 90 days, but he has had to be in hospital 3 times this year already, and he too young to have to have to deal with the cvs and being able to get insurance..he is consider self employed,and we tried blue cross blue sheild and they consider his illness a pre exiting condition..but i don't think that it falls under any of those such illness..most doctors and nurse, are not even familar with the illness.so if u could give me some advise on what to do, we would really appriate it.. thank you
insurance
why would you have to turn it in to insurance as cvs ? why not just say that you (your son) was hospitalized for the flu. is he definitely diagnosed with cvs by a dr. ? mine won't even give it a diagnosis . i would just not tell the insurance company about cvs. the dr. would surely go along with this. just a thought.
insurance
hello again...i haven't posted in forever but I had a couple questions about your son before I can help try to point you in the right direction about the insurance stuff.
How much income does your son have now? Have you looked into if he qualifies for your states medicaid program? Even if his income is too high for that your state may have a program to provide insurance to low income people that is seperate fram Medicaid. In NJ it is NJ Family Care...many states have them. Call your local department of social services to ask. And talk to the social worker at your hospital she may be able to help you.
What state are you in? In some states it is illegal to not give someone insurance because of a pre exsisting condition. Be sure to check the laws in your state...but also check any policy for waiting peroids to see if they say that they don't cover a pre exsiting condition for a certian period of time after the policy was issued.
Good Luck
~sharon
chopinmrl Registered User
Posts: 5
(3/17/03 8:33 am) Reply
re: Thanks for your reply
Hi lblack,
Between episodes, I am perfectly healthy. No headaches, stomach problems, etc. I would get carsick when I was little, but only if I sat in the very back of our station wagon and read while we were on a long roadtrip. For me, my biggest triggers are infections (all my sisters would have a cold, I'd have an episode but never come down with a fullblown cold) and a combination of excitement/exhaustion for example, if I went on vacation and was really excited AND stayed up late then I would often (but not always, maybe 60-70% of the time) would have an episode. My parents minimized these episodes by making me have a bedtime until I was 14 or so--even on vacations. However, I still had lots of episodes that we have no idea what triggered them. I've been through stages where I would have an episode every 5 weeks for no apparent reason. The episodes that were infection triggered also decreased as I got older and was immune to a lot of the colds that went around. Neither negative stress (tests, etc) nor any food seem to be triggers for me. Even though I know my triggers and avoid them when possible, I still have "random" episodes that I can't correlate with anything. I have heard of people who've grown out of it. It seems unlikely that I will do so as I've had it for almost 20 years (I'm now almost 23). It is possible to have a normal life with CVS-I'm at college (23 hours away from home) and planning on getting married and going to grad school. I also think it's easier to live with if you've had it since you were little because you just accept it as part of your life and then move on with your life. Hopefully Jason will grow out of it. If his episodes are really often then there are drugs that can help prevent episodes (however dr's only like to give them if the episodes are really frequent). I started amitriptyline almost a year ago after having 4 day episodes every 3 weeks and have only had 1 episode since starting. I don't know if Jason's episodes are that frequent or if he is old enough to take it. I would avoid preventative meds if you could. Zophran and benedyll work very well for shortening/stopping episodes for me. Zophran comes in a form that dissolves on your tongue so you can take it when you feel like you're going to vomit the first time (or immediately afterwards) and it works fairly quickly. It also helps me to lay an icepack or a cold wash clothe along the left side of my neck and under my cheek bone. It often slows my dry heeves. Something else you might want to check out is the CVS association has an e-mail list that serves as a place to exchange info, ask questions, vent, etc. It's pretty active and their are a lot of people on it. The CVS association is at www.cvsaonline.org if you're interested.
thanks again
hi chopinmrl, thank you so much for your time. i will go to this website. as of right now jason is doing great and is 13 weeks between episodes. that is the longest ever, i am hoping the streak continues. i also was wondering if you are a worrier. jason seems to be a worrier. he worries about everything , kind of a nervous person i guess you would say. well i guess that is all for now , will talk to you later.
Re: CVS
Thanks for your detailed posts. It's eerie how similar a lot of it is to what I've been through...and for the longest time I thought I was the only one who had this. I guess not. =)
I'm at 2 years, 5 months since my last hospitalization, and I can barely believe it. We've also been able to mostly control my daily headaches, and I don't think about this stuff much anymore, which is great.
I have a question though...does anyone have experience with pregnancy and CVS? That's one thing that still worries me, when the time comes for all that.
Re: CVS
I have had three pregnancies. What do you want to know? For me it was pretty bad but you never know how your body will react, some women with normal stomachs get so sick they need iv nutrition or hydration when they are pregnant...others do fine, my guess is that probaby more cyclic vomiting women do get hyperemesis, but the type of vomiting that I got with my pregnancies wasn't the same as from my gi stuff. The good news is that no matter how sick you are there is nutritional support that they can give you to get you thru so that you can have a healthy pregnancy. I have 3 beautiful kids, it wasn't easy to get thru the early part of my pregnancies when the morning sickness (more like 24 hour sickness) was the worst but it was worth it for sure.
~sharon
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul. ~ Madeleine L'Engle, A House Like A Lotus ~~~~~~~~~~~~~~~~~~
TravisMom
Unregistered User
(4/11/03 1:22 pm) Reply
CVS / Abdominal Migraines
Hello~
My son, who is now 12, has had 2-3 of these severe stomachaches a year for the past 4 yrs. or so. Since I am a migraine sufferer, which turned into Chronic Daily Headaches, which have to be medicated with Long Acting opiates, I had a clue that Travis might be having Abd. Migraines, since I have read tons of literature on the subject of migraines...
The doctors first thought it was Appendicitis, but ruled that out with a blood test. Then an X-ray was taken to make sure it wasn't a rupture of the intestines. The x-ray showed TONS of little donut hole sized circles in his intestines. It scarred the TAR out of me, I thought he was full of tumors. The doctor said it was gas bubbles and his stomach probably hurt so bad due to that and constipation made it worse. I then started giving him 2 Fiber Con tablets a night. They have been so bad a couple of times that we had to go to Urgent Care and they had to give him Phenergan and Vicodin just to stop the pain and vomiting...Now, if he awakens crying, I immediately give him 2 Phenergan tabs, he still may throw up, but it seems to stop it right after that...And if it's been long enough for some of the Phenergan to get into his system, it will help him sleep. That's the thing that differs from CVS and makes me think it's Abd. Mig. he doesn't sleep between vomiting, he's in SEVERE pain and SO uncomfortable and crying, he can't seem to even get comfortable.
An ultra-sound and an Upper GI was done and nothing abnormal was found...with nothing being found, I pretty much have thought it was Abd. Mig., but have not gotten a diagnosis from the doctors...Thanks to all for the information, it's pretty much confirmed what I thought all along.
cvs questions
My daughter whos 10 was diagnosed with cvs 10/2002 after suffering with repeated episodes since she was 2. She has been tested for every imaginable problem until she was properly diagnosed. We have a pediatrician, neurolagist, and gi working together on her treatment. She takes several meds and I have been able to control most episodes without hospitalization. But, her episodes have gotten less frequent and more severe and she always has diarrhea. It was only so often she got this before with an episode.Now this happens each time and she has absolutly no control of her bowels during an episode. Not only is it bad enough with the vomiting I cant even get her to the bathroom. I didnt know if anyone else has had this with cvs and what additional meds could be used.
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