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wynnak

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Introduce Yourself!
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Blynda
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abstractgirl

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Hi.  I am Julie, mom of a 25 year old daughter with CVS.  It has been a rough couple of years with no real help from the medical community.  I am afraid for my daughter.
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wynnak

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Reply with quote  #3 
Hi Julie,
Welcome to the Boards. I'm so sorry that you guys are going through this. I know how tough it can be to watch your child go through this. We changed Doctors more than I can tell you. To find one that knew anything about it. They knew about it eventually enough to diagnose it. But not enough to treat it.
You may see on the home page for CVSA that they are currently working on Adult Empiric Guidelines. Hoping that, that will be helpful as well. If you have a specific topic you want to talk about try posting a new topic. Or responding to one already out there with a question of your own as well.

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DarleenMarks

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I am a mom, my daughter had it so bad. I was at my wits end. I did my homework with folders of triggers my daughters was her period. When she was pregnant she stopped the puking. After her 2 children she did not want anymore children . The drs surgically put a patch to stop pregnancy in her arm. She has not had her period and she has not had any episodes. Is so scared of puking her esophagus she thinks is ruined
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ginny

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The majority of females do seem to have a relationship between their menstrual cycle and their CVS symptoms.  I am happy your daughter is doing so much better.  I know of the Depo Shot every three months but I don't know about a surgically placed patch.  I think this information could help other females.  Can you let us know what the patch is?  
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Ktwood

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Hi! My name is Katie. My 6 year old daughter has been struggling with boughts of vomiting since she was 3. It wasn't until this year that her pediatrician finally took it seriously and started exploring further since she hadn't gained any weight in over a year. Her GI specialist suspects CVS, but it has not been formally diagnosed. When my daughter was smaller, her vomiting episodes were just when she had a cold virus and it would be just mucus she would throw up. Towards the end of preschool and into her kindergarten year, the episodes became more frequent and it was now the whole contents of her stomach she was vomiting up at night/ early morning. She also makes a stridor sound when she is vomiting. Like she is choking and can't breathe. Her pediatrician and ENT are leaning towards something that is causing a Laryngospasm and that the vomit is just a side effect of not being able to breathe, coughing and panicking. Her GI thinks different. But there are certain things that line up with CVS which makes me think it's a possibilty. She has always had one of these vomiting episodes on christmas eve.. excitement trigger? And they seem to happen every time she catches a little cold.. another tigger? We can't seem to go a full month without one. But she will only vomit once, maybe 2 or 3 times more and then is ok. It doesn't last for hours and hours.
Just was hoping to get some insight on CVS and see what other people have exprienced. I just want my little girl to find some relief.
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wynnak

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Ktwood, Welcome.

The experiences will vary widely on the episodes themselves if that is what your question is (try posting your question under a new topic). I've seen a lot of people talk about their experiences and what their episodes entail and they vary greatly. I agree that there are a lot of commonalities with CVS that would have your doctors leaning toward it. It is a condition that is diagnosed based on ruling out everything else. I have recently also witnessed the Larynx spasm situation that you are referring to.. and that can cause a panic situation all it's own. That had already been diagnosed in the child that I was involved in seeing, so I can not pretend to know what they would do to rule that out, but now I am curious. It sounds like you have all the right people on board to help you get the diagnosis. That is the hard part.. waiting. Have you contacted the office for the packet regarding CVS? Other than that, post some questions/responses on some of the existing topics, or post new topics where we can help discuss things to help you and your daughter. Sorry that you are both going through this. Hops you can offer you some help and support.

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TheLorax

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Hey, my name is Robin and I'm posting for my son.  He has had this intermittently for the last 3 or 4 years. It always seemed to come on when he would get sick with whatever was going around. Then when everyone else at school would be over it in a couple of days he would be sick for a week feeling queasy. 

We had talked to our doctor about it in the past but it was never enough of an issue to really do much about it. This time is different. In early to mid April he got sick with some junk and had it for a day or two and then the queasiness started in again. Now it's going on a month and a half and it hasn't gone away. :/ We've done all sorts of tests and everything is totally normal.  He never really vomits. I think in all of the times he has had this happen he has only vomited once which was earlier this year. 

So far for testing beyond blood work all we have really done is an ultrasound which didn't show anything. Everything looked perfectly healthy which I guess is good. [smile]  We're scheduled to see a GE to talk to them and we're also working on getting a full allergy panel with an allergist and trying to get in with an ENT to see if they can see any issues with his sinuses or ears. He did have a bout of vertigo last year so we think this may be related. 

At this point he's missed so much school he's not going to pass his classes and we're working to get him incompletes and a tutor to work with him. 

We've tried a pretty wide variety of things to alleviate the symptoms and nothing works. All in all this has been very frustrating. The one positive thing is he has always had a very positive attitude and he's still in good spirits. He can talk to his friends online and play games with them in the evenings so there's that. 



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wynnak

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Reply with quote  #9 
Its good that they are having everything looked at. CVS is a rule out condition. Have they considered POTS or conditions similar to that? If his main symptoms are queasiness and dizziness have they added those together? Is it worse after waking when he first rises? What have they tried on the nausea? I'm not sure how old he is.. but get a 504 or IEP in place for him for school. We have found that there are lots of schooling options. Be pushy. 

I like the Allergy and ENT. We have been through both of those. There are such interesting things to look at there. Vertigo/dizziness is like every other symptom.. it can be caused by a variety of things. It's good that you are going through them. Let us know how they go.

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TheLorax

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Reply with quote  #10 
Yeah, he actually had a bout of vertigo last year so we think it could be related.  I wish we could figure something out. :/  It takes soooooo long to get Dr. appointments these days. 
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wynnak

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Reply with quote  #11 
Dizziness is also related to migraines. So there is a lot to look at.
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island1

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Reply with quote  #12 
Hi all, I have a 14 year old son recently diagnosed with CVS in April 2017. Previously they have mis diagnosing him with the stomach flu and one time with C-diff.  We finally got in to see a pediatric GI in late March 2017 and after running several tests that include a barium test, endoscopy, GI emptying and brain MRI the diagnosis of CVS was made. During all this time he has missed a lot of school but we work with the guidance counselor to get the homework from school and he does his assignments online.

His pediatric GI put him on ondansetron for the nausea/vomiting and hydroxyzine. Between the hydroxyzine and vomiting 2-5times from midnight to 5am he has severe exhaustion. We keep a log of his episodes and medication and realized that the hydroxyzine wasn't working so with approval from his pediatric GI we got him off of it and he just takes ondansetron now.

But his GI did recommend that he go see a practitioner at a medical hypnosis clinic. Ironically he did his first and only medical hypnosis appointment a few hours after his gastric emptying scan and he came out like a different boy almost like himself before all of the vomiting/nausea started last year in September.  I highly encourage parents to try the medical hypnosis since it does not involve taking another pill and it helps the child use different techniques (guided imagery) to get through the episodes of vomiting/nausea and anxiety that is associated with them. Practicing the medical hypnosis techniques will help.

I feel so far it is the only thing that is helping and really wanted to share it with other parents. It is so out of the box but it does help. We are seeing his vomiting episodes dwindle (since Friday he had none after 35 days straight) and today is Sunday. Hope this is helpful to someone.
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wynnak

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Reply with quote  #13 
Welcome. We tried a lot of stuff that was out of the box. We still do. So, glad you found something that work for you. I know what it's like to count days and live on the edge of having another episode. I have heard that people have an app on their phone to help them mediate through an episode as well.. imagery and breathing. So I know things like this are similar. We tried CBT or cognitive behavioral therapy.. it was okay for finding triggers, but we had most of them down by the time we tried.

Thanks for sharing.

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island1

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Reply with quote  #14 
Hi all,

Today started off good. Last night my 14 yr old son slept through the night (no vomiting episodes) and today he went to school on the bus. I almost didn't know what to do laugh or cry. It felt like the first day of school. I am very happy and hopes that it will be a good day for him.

His triggers are chocolate, cheese and anything with msg. So we have had to switch to almond milk and I try to cook most of our meals at home with the occasional subway sandwich. Also his GI office requested that we decrease his electronic stimuli so very little xbox etc. He still has his phone and texts his buddies etc. but with summer around the corner there is a greater chance that as his energy levels increase he can go swimming or play tennis/basketball or just be outside.

Praying for all the moms who continue to battle CVS one hour, one day at a time.
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wynnak

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Reply with quote  #15 
So excited for the change. I remember that change in my son as well. He increased activity.. because it was summer and did well for a while. Hoping you both have good results with your summer.
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