Does anyone know anything about CVS?

Kari - posted on 01/14/2009 ( 21 moms have responded )

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Does anyone know anything about CVS? Not really sure I understand what it is exactly or how to treat it???

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[deleted account]

go to mayoclinic.com and search it there. they have all kinds of info in it. Way to much for me to type in here.. Hope it helps you...

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[deleted account]

I am definitely not a doctor and am still learning about this as we go.  I am going on personal experience, so if you want to talk or would like to exchange experiences anytime, just click on my name.  Good luck to you and your daughter!



Rachel

[deleted account]

Just FYI: This is considered to be like a disability.  And you may have already done this but, if you have it diagnosed by a doctor be sure the doctor has sent something written to your school and that the nurse at the school has it down, so that with her missing so much school they have it down in writing there from the doctor that she has this and that is the reason for the absences.  I have personally sat down with my daughter's teacher and let her know what she has and what sets it off.  Usually this is known to come on in the middle of the night or early morning hours for my daughter, so we know if she is going to have an episode before school hours and usually do not have to worry about her getting to school and having an episode start.  It has happened at school before but very rarely.  It usually starts in the middle of the night.  But that is just how it happens for us.

[deleted account]

Here is that website:  www.cvsaonline.org



It is the Cyclic Vomitting Syndrome Association.  You don't have to be a member to use the site.  It has a lot of good information.  There is a online community message board on there.  A friend of mine that has a daughter with CVS sent the link to me for the site when I found out my daughter had it, so hopefully it will come in handy for you. 

[deleted account]

Dont' feel horrible.  You didn't know.  Just like us, we didn't know.  My daughter has always been more of a nervous kid and we just thought it was that.  I think I understood it better then my husband I guess.  He was a little harder on her and I think to this day he still doesn't really understand it.  I have tried to explain it to him but he comes from a family that his Dad doesn't go to the doctor unless he is on his death bed and thinks doctors are quacks and then he married me who is allergic to everything and then our son has asthma, sinus problems, acid reflux and has been sick from day one and then my daughter who has this!  I think he thinks she will grow out of it and I hope there is an end but our pediatrician says that a lot of times it can progress into actual migraines of the head as they go into their teen years because of hormones and such and I am sure my daughter will go that route because I am on medication for migraines and it is in my family.  It is hard for me to sit and watch her vomit and vomit and her to have such pain in her belly and know that this is going to happen always on every birthday, vacation, etc.  It happened just on her last birthday.  She also missed her school picture day.  We actually did make it through the holidays okay this year.  But, I just hate that she has to miss out on all the fun stuff.  I am her Mommy and I can't promise that this will go away.  I can't make the bad things go away this time and that is usually my job.  That is what SUCKS about this!

Kari - posted on 01/15/2009

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Wow. That sounds so much like my daughter. I too feel so bad. So many times when she was little she complained of tummy aches. But really she was telling the truth. OMG I feel like a horrible mom. Thank you for sharing your story with me it really hit home with what we are going through right now.

[deleted account]





Posted by You (Jan. 15, 2009 at 9:36 pm)





Hi Kari, my daughter has been diagnosed within the last 6 months with CVS.  She is 9 now, but I can honestly say it has been a LONG road for her and us up to the point of when she was diagnosed.  There are no tests or x-rays that can diagnose it.  It is diagnosed by the childs health history and if you have a good doctor that can pick up the signs and symptoms and that will diagnose it as such.  My daughter started out with always have tummy aches when she woke up in the mornings and us passing them off as being a nervous stomach and that was around the age of 3? And then around the age of 6 that progressed to going to bed at night fine and then waking up in the middle of the night vomitting for no apparent reason and she would vomit sometimes up to 15 times within hours.  That would be passed off as a virus sometimes or a nervous stomach others.  This would sometimes happen once a month or a couple times a month for a few months and then we would have a few months off and then it would start up again.  She complained of a lot of tummy aches and so around the age of 7 or so they said she probably had acid reflux type issues because we noticed it would happen if she ate pork products, tomato based products or greasy foods and so we kept her away from those and gave her Prevacid Chewables to curb it if it did happen, but it didn't take away the vomitting.  She was growing well through it all and didn't seem to be having any other problems, so her pediatrician would always say, well, if she does it again we will probably have to do more tests and then we would have our few months of no vomitting and then it would start up again but it would be around the time of viruses and so it would be passed off to that and the amount of vomitting that she did during each episode was passed off to the fact that she had acid reflux and because of the reflux she vomitted more.  Around the age of 8 we started noticing more of a cycle to the vomitting and also that it happened not only when she had a virus but also when we were on vacation, when it was her birthday, on school picture day, holidays, etc.  It all started to add up in our eyes and it really hit her pediatrician what it was.  CVS or it is also known as abdominal migraine.  My husband and I thought it was anxiety and so that is when we took her in and pushed the issue with her pediatrician and that is when her pediatrician really took a good look at the history and sure enough, it was CVS.  Anytime my daughter would vomit, she would have HORRIBLE abdominal pain in between each time she vomitted and that was the abdominal migraine, just like a migraine of the head but in the stomache.  All of these incidents are brought on by stress, good or bad, hence her vomitting on vacations, holidays, birthdays, etc.  So whatever would give a person a migraine of the head also gives a person with CVS a migraine of the belly and makes them throw up.  Makes me sad though now that I know because many times we thought my daughter was making it up (the tummy aches) or playing around trying to get attention or somehow could stop the vomitting and she has said that it made her feel bad because she knew we felt that way and she was truly sick.  It makes it hard because CVS is not very well known and very hard to diagnose because there is not a blood test for it.  They now have her on Omeprazole sprinkles that we sprinkle on applesauce to help with the acid reflux and she does not complain of tummy aches anymore, but we still have the episodes of vomitting when she is stressed out, but they have given us Phenergan suppositories which are to cut the nausea and if I give it to her at the onset of vomitting it really seems to cut it pretty quickly and there is not nearly the amount of vomitting as there used to be unless it is viral and then it doesn't seem to cut it, it has to run its course.  So, sorry about the long story but it is our story and hope it helps you out.  If you would like to share yours, I am willing to talk.  I also have a web-site that I use with good information specifically for families with members with CVS.  I will have to look it up and I will post it.  Good luck to you!  Rachel 





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Jessica - posted on 01/15/2009

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here is a good site to check out:



 



www.parent-2-parent.org



 



this group has several moms of kids with CVS ranging from mild to severe. I know you can recieve some useful advice from them



 



good luck!

Jessica - posted on 01/15/2009

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here is a good site to check out:



 



www.parent-2-parent.org



 



this group has several moms of kids with CVS ranging from mild to severe. I know you can recieve some useful advice from them



 



good luck!

[deleted account]

yea pretty much.. thats why I love the mayo clinic sit. It gives you so much info and answers almost all your questions if not all of them.. and it is the #1 medical site.

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