Although I am not an adult with a chronic illness, my son who is 3 1/2 suffers with cvs. I am hoping to find a young adult who has this to help me understand how he feels. Since he is so young, he can only tell me so much about how he feels and what it is like for him. I know enough about symptoms and characteristics of the syndrome. I want to know what he physically feels like when he is sick and exactly what hurts, what it is like for this little boy to continually vomit while he is barely conscious.
I don't have CVS but I have a gi motility problem that causes a ton of vomiting. It is something that is very hard to describe to anyone who hasn't been thru it. If he is barely conscious is it from exhaustion or dehydration? For me the dehydration feels worse than the vomiting itself does. It makes me feel so awful, shaky and tired and clammy all over. Again it's hard to describe. But keeping hydrated makes things much more bearable. What antinausea meds do you have for him to try to reduce the vomiting during his bad spells?
I'll post this to the gi young adults list that I am on too. I know that there are several others moms of little ones on there for the same reason you posted here. That they want to be able to understand what their kids are going thru better.
take care. I know how hard it is as a mom to see your baby sick but you being there and helping him the best that you can will mean so much to him.
~sharon
CEB4Dolphin
Unregistered User
(11/5/02 10:53 am) Reply
CVS answer
Hello,
My name is Caitlin, I'm 19 and have had CVS since I was 4. I read your post on the adults with chronic illnesses board. When in an episode my esophagus hurts from the acid of the vomit, my stomach hurts a lot, also sometimes I have a headache. Does your son talk while he is in an episode? I never talk when I'm in an episode because it made me vomit sooner than I would if I didn't talk.
I thought I would let you know some things that really helped me feel more comfortable when I was in an episode. I always liked to listen to a tape of Disney lullabies which helped me to relax, and take my mind off of the pain and being sick. I also liked drinking apple juice, it always came up right after I drank it, but it helped some of the pain to have something to get sick on. I hope I was of some help to you. Let me know if you have anymore questions.
Re: CVS answer
Catlin,
Thanks for posting. Welcome Have you had to miss a lot of school because of your bad spells? Did you manage to graduate from high school when you were supposed to. Are you in college now. If you are how is your school with your absences during you episodes?
I am starting a class in Jan and I hoping that I won't get too sick and have a problem finishing my work. I am going to take an online class so that I get to work mainly from home so that if I don't feel good I can still try to keep up.
What about hobbies, friends etc? I think it might help Charlies mom to hear how you deal with those things and when your illness has been a problem and how you have overcome it. Now that I am a mom, I am more able to see the fear of if your kids can have a good, normal life even though they have an illness.
I hope you will post again soon. This community is new but I think it will be so nice to have other young adults who are sick. We have our own unique set of issues that are different from other people our age and different from people who got sick when they were older.
~sharon
CEB4Dolphin
Unregistered User
(11/5/02 10:25 pm) Reply
answer
Hi Sharon,
To answer your questions, fortunately I have been episode free for a little over 3 years. The last time I had an episode was when I had my wisdom teeth out. Fortunately I was able to graduate from high school on time. I missed a lot of school when I was in elementary school, in middle and high school I started having less and less episodes. I think I have out grown CVS, but I try not to think of it either way.
Re: answer
I am really glad that you are doing so well right now. Are you still in school or are you working?
~sharon
joelles
Unregistered User
(11/19/02 8:51 pm) Reply
cvs
I have a few questions. I don't know if my son who is 6 has cvs or just a nervous stomach. 4 times twice a year he has had a episode where he vomits once for no apparent reason. I think some of it is nerves but after he vomits he just falls asleep and is fine the next day it has happend all 4 times at night. a few of them when he was asleep. Is this a symptom of cvs? I don't know what else it could be or why.
Re: cvs
If he is vomiting when he is asleep I am wondering if he could have reflux. If he has bad reflux it can make stuff come back up his throat espically if he is lying down. I am sure that everyone has had that wet burp feeling where a mouthful comes up or almost comes up but not quite. Does he do that a lot? I may be that sometimes when he is laying down that he just cant keep it from really coming up and it starts him vomiting. How often does it happen? Another thing I have noticed is with my daughter who does the same thing, she pukes out of the blue occasionally for no apparent reason, is that she has awful morning breath some days. I think its from the acid back up from reflux. For us right now it isnt a major problem but if it is getting in the way of your lives take him to a peds gi specailist. It's really always better to get things checked out even if it just to give you the peace of mind of knowing what you are dealing with and what to do about it.
Let me know how he is doing and what you decide to do.
Welcome to the board! I am glad that you found us and I hope that we can help you to figue this out.
joelles
Unregistered User
(11/21/02 3:08 pm) Reply
cvs
Hi Sharon. Well when my son burps nothing comes up.The problem started last year out of the blues.I went out 2 weeks in a row and my son was home with my husband. I am a stay at home mom so My son is always around me when I came home he fell asleep and then woke up vomiting. This happend twice. A year went by without any problems then we get to a few weeks ago and again 1 night Me and my husband were gone and he threw up when we got home and the other time when my husband was not at home. We have also just moved so he has to get used to a new school and new friends. Now I am trying to figure this out because of what I have read of cvs something triggers it stress excitment, depression. The only thing I am confused about is that SO FAR he has only vomitted 1 time for the night it is not a continuous thing for hours on end. Does this sound like something related to nervous stomach or cvs? MY son's doctor was absolutely no help to me what so ever. I would appreciate any info you have. Thank you!
Re: cvs
I dont know that it sounds like CVS, from what I have heard from others those episodes tend to last for a while with many vomiting episodes. But a nervous stomach isnt the only possibility. Severe refulx can cause vomiting espically at night when he has been laying down. If he even has a small amount of backup it could cause him to gag and vomit. A peds gi doc would be the best one to help you sort out exactly what is going on. You also might want to keep a journal of his diet, activvvities, any stressors and his symptoms so that you can try to identify any triggers for his episodes.
Sorry I can't be of any omre help than that.
~sharon
joelles
Unregistered User
(11/21/02 6:45 pm) Reply
cvs
You did help you got back to me with a different option and a lot quicker than my son's pediatrician did.
I am going to look into a different doctor.
Thank You!
CCruz1117
Unregistered User
(12/5/02 10:32 pm) Reply
cvs
I have a 19 year old daughter who has been hospitlaized 5 times this year due to vomiting episodes that are just terrible. She has been through more than a dozen test ans they still have no clue on what is causing this. I have been researching and came up with cvs I really believe this is what my daughter has. She finds confort in taking hot showers.
Please provide any advise.
Re: cvs
Hi, my name is Rachel. I'm 19, and the first time I was hospitalized for uncontrollable vomiting was at the ripe old age of 10 months.
Just about 8 hours ago, my older sister (who's a 3rd year med student) called and told me to look up CVS. I'm still in shock to find out that this disorder has a name, and I'm not alone in it. 19 years of being sick and seeing specialists with no answers is a long time!
Reading through this thread, I'm starting to realize that I can help out with a lot of these questions. I'm a bit overwhelmed tonight, but I'll be sure to come back and describe some of my own experiences.
One thing I'd like to emphasize, though, is this: It is possible to live a normal life with CVS. Sure, hospitalizations can take you out of school every once in a while, but I always bounced back. Between episodes I'm mostly fine (aside from migraines), and yes, I graduated high school on schedule. It wasn't easy - I got sick during the first week of school for three years in a row, 9th through 11th grade. I had one year with 5 hospitalizations, two of which were only 6 weeks apart. I even had a migraine that started mid-March and didn't break, even for a minute, until about a week into June, when I started vomiting and was admitted to the hospital. BUT, in the end, I got through it okay, and it doesn't run my life.
I'm sure I'll have more to share in the future. I'm glad I found out about this, but it's a lot to absorb!
Re: cvs
Nice to meet you Rachel. Sorry I didn't post sooner but I just spent a week in the hospital myself. I know how hard it is. The vomiting and migraines can take a lot out of you. My primary diagnosis was dysautonomia but it causes gi motility problems that sometimes act like cvs and other times totally shuts down my gi systems so I have had to be iv fed. And the migraines that last for months, ick... I can realte to that for sure. But I can also relate to the fact that you adapt and live your life. You can find good in almost anything. A lot of my life was shaped by my illness and for the better. I aam a stronger better person for it. I have met some absolutely incredible people who I would never have met if we hadn't all been sick and my life would have been very empty without them in it. I think that the biggest challenges in our lives teach us the most and give us the most.
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"'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
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"I've developed a new philosophy... I only dread one day at a time."
-Charlie Brown
sywaci Registered User
Posts: 2
(12/15/02 4:28 am) Reply
Re: cvs
Sharon,
Thanks for your response. So sorry you were just sick again. =( That's just no fun at all.
It's interesting that you mentioned Dysautonomia. A family friend suggested that I might have some form of that, about 4 or 5 years ago. Of course, people have suggested that I might have just about every disease known to man...so who knows.
To tell you the truth, the idea of being able to share similar experiences with people is still sort of weird to me. I've gone my whole life with no idea what was wrong with me, or that anybody else out there was going through the same thing...but now that this monster has a name, I hope to meet others who understand what it's like. I don't really tell my friends much, because they usually end up feeling bad for me, etc. I don't need pity, y'know?
In fact, it even feels weird to be posting in this messageboard at all. I don't feel like I have a "chronic illness" - I've been lucky enough to have a really normal life. Plus, my older sister has a much worse disorder, so I've always seemed healthy compared to her!
Later,
Rachel
necie1152
Unregistered User
(12/18/02 6:26 pm) Reply
CVS
Hi,
My grandaughter, who lives with me, has been diagnosed with cvs. She has had this since she startred 1st grade and is now in 4th. It seems to get progressively worse. She has a bout almost once a week. She may or may not start with a migraine, then will start to vomit. This will continue for approx. 24 hours, sometimes more, then as fast as it starts, its over. She will vomit anywhere from once an hour to 3 or 4 times an hour. And dare not wake her for she will jump up and run to the bathroom just that fast. She has seen several specialists, had several tests, and can find no reason for the vomiting. Finally, I changed pediatricians, and they told me about cvs. I need someone to council me on what to do when she does have an attack, any foods to stay away from, any meds available to help diminish the amount of times she vomits, and anything else that may be of help.
cvs
HELLO CCRUZ117, I have a 20 year old son that does the same thing with the shower bit when he has explode,i just found out about all this, and i just can't believe what i have found out.. everything that i have read is exactly what he does, his explodes last for about a week, we have had all the test ran on him that can be ran, and never found anything, but no one has ever mention this condition to me and my husband, we have been dealing with since last december of 2001,it all of a sudden came on, and the last year it was every 3 weeks that his explodes came, then in july until this past december he never had one.. he is in another one as we speak..so im open for any information on this condition that i can get...medicines that can be taken to help this along.. thanks so much josh mom
dominagi
Unregistered User
(1/14/03 6:45 am) Reply
I can relate
I can clearly understand what your grandson is going through. My 6 year old has been suffering with cvs now since she was a baby. Only last year in May did they actually know what it was called. I have had to transfer hospitals and go through so man doctors before hand.
When My little girl ( which by the way is worst now than before) goes into hospital, they give her an IV and odansatron ( anti naseau drug which is generally used for chemo patients ... quite strong) and ativan ( a total muscle relaxant ). She will then usually be admitted a week or even more .. which depends on the episode. The doctors have tried Elavil on her used for cronic pain, but is being changed as I type this. Nothing seems to work. Her attacks also either start with pain or vomitting. Once it starts theres no stopping it. I am writting a journal to try to keep tabs of what may trigger hers.. and from what I noticed is... any kind of virus and or infection ect.. its her triggers.. sometimes but rarely its an event that can either cause excitment or nervousness. I do know from what I have researched on cvs that each child is different.
BTW, sometimes an allergy to foods or something can be a trigger too.. Suggestion might be to write down events prior to your grandsons attack. I can only sympathise with you and the parents, Its heart breaking and frightfull! ..
Warm thoughts.....
dominagi
Unregistered User
(1/14/03 6:47 am) Reply
sorry
apologies on teh grandson part.. I meant to write grand-daughter.. its early for Me and havnt slept in much these past few days....
rmooreny Registered User
Posts: 3
(1/19/03 11:41 am) Reply
Re: cyclic vomiting
I don't have cyclic vomiting syndrome, but have heard of this organization that might be able to provide you with some info:
Cyclic Vomiting Syndrome Association
13180 Caroline Court
Elm Grove, WI 53122
p 262-784-6842 f 262-821-5494
www.cvsaonline.org
Have you had to miss a lot of school because of your bad spells? Did you manage to graduate from high school when you were supposed to. Are you in college now. If you are how is your school with your absences during you episodes? 
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