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jacobnunley

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I found this board after trying to research what CVS is.  My 5 year old son was diagnosed with CVS last Friday but had his first episode May 1st. We didn't think much about it then but 1 month later it happened again around June 1st. after June 1st it has been happening about  2 times a week. each episode last about 4 hours .   This morning around 4 am he runs into our bedroom and says his tummy hurts - So I start to prep a place for him and within 4 minutes it has started.  Is there any thing I can do when his tummy 1st starts to hurt?   

He is currently on **mg of Cyproheptadine he started this last friday night.  The doctor want's to give it a week before we change anything with the meds.   It seems that Pork is a trigger for him, but clearly their are other triggers.  

Sorry for the rambling I'm just trying to find a new normal. 
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wynnak

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Consult with his doctor, but ask specifically about the abdominal pain.. Pretreat with zofran if they gavecyou that or another anti-nausea. We treat the abdominal pain like a migraine since it could be one. Abdominal migraine. Sorry you are going through this. Finding his triggers are key. Super helpful. If it is around the same time..pre-treating will be key. They may change his meds or up the dosage if there is an increase in episodes. Mine used to get worse when he was growing.
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ginny

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I am confused about the history.  I understand that you have the CVS diagnosis and I am so sorry to hear about such a little one going through this misery.  

Tests have been run to rule out other conditions?  Unless things have changed, the cycles should be stereo-typical and have been taking place for at least 6 months.  Each person with CVS is different from the next but usually they meet many of the typical criteria.

I hope your pedi has run testing and has experience with CVS kids.

If you have not reviewed the CVSA web page and the papers under the research tab, please check out the Empiric Guidelines and also the NASPGHAN study on children.  This particular paper has symptoms matched to suggested tests as well as helpful treatment information.

I would also keep a careful watch on his bowel patterns. Typically the CVS patient has rapid gastric emptying except for a slowing as a cycle approaches.  Even a child who seems to have diarrhea can also have some old stool which will be the reason for the liquid stool.  If he is suffering from constipation, this can bring on significant belly pain and nausea.  That will usually lead to meds to stop the diarrhea, which is not really diarrhea, and help with the pain.  Those meds will further slow down his bowels.  A messy circle of symptoms and treatment.

Not everyone will respond to the same meds.  Periactin might work well for your little guy --or might not.  Zofran helps some, others say it stops their vomiting but prolongs nausea.  There are other anti emetics that target different parts of the brain such as Dramamine, Benadryl, Atarax, Emend --and I think Blynda's son has a different antiemetic.  

The key to ending a cycle is deep sleep.  

My daughter would usually dehydrated quickly.  She tended to start a cycle same time as your son, vomiting would occur every ten minutes exactly, and within a couple of hours she was vomiting blood.  We were off to the hospital around that point.  Her meds usually including thorazine, an antianxitey (can help with nausea) med, an antiemetic, something for the acid, and probably other meds.  If she was placed properly in a deep sleep, the vomiting/ cycle stopped and if she slept solid for a day or two, she was good as new.

If you are not able to totally stop the cycle, it can pop back soon.  It might seem like a new cycle but it is often a continuation of the prior cycle.

Keep a journal for triggers.  Pork is an easy elimination but barometric changes, excitement over a birthday party, worries about school, a cold or allergy, etc. can all be triggers.  There are things you cannot control such as the weather but if you know hot humid weather is a trigger, you can take measures to decrease exposure or adjust meds as needed.

Some of the kids are doing well on the Supplements.  Ask the doctor before trying even these products.

We did have one youngster with what seemed to be very typical CVS cycles.  It was found much later that he had waxing and waning appendicitis.  Others have had a kidney condition (UPJ disorder, reflux, more).  Blood testing during a cycle is suggested to rule out a metabolic condition.

Best to you and please let us know how your child is doing.


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ginny CVSA Moderator
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jacobnunley

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Reply with quote  #4 
Quote:
Originally Posted by ginny
I am confused about the history.  I understand that you have the CVS diagnosis and I am so sorry to hear about such a little one going through this misery.  

Tests have been run to rule out other conditions?  Unless things have changed, the cycles should be stereo-typical and have been taking place for at least 6 months.  Each person with CVS is different from the next but usually they meet many of the typical criteria.

I hope your pedi has run testing and has experience with CVS kids.

If you have not reviewed the CVSA web page and the papers under the research tab, please check out the Empiric Guidelines and also the NASPGHAN study on children.  This particular paper has symptoms matched to suggested tests as well as helpful treatment information.

I would also keep a careful watch on his bowel patterns. Typically the CVS patient has rapid gastric emptying except for a slowing as a cycle approaches.  Even a child who seems to have diarrhea can also have some old stool which will be the reason for the liquid stool.  If he is suffering from constipation, this can bring on significant belly pain and nausea.  That will usually lead to meds to stop the diarrhea, which is not really diarrhea, and help with the pain.  Those meds will further slow down his bowels.  A messy circle of symptoms and treatment.

Not everyone will respond to the same meds.  Periactin might work well for your little guy --or might not.  Zofran helps some, others say it stops their vomiting but prolongs nausea.  There are other anti emetics that target different parts of the brain such as Dramamine, Benadryl, Atarax, Emend --and I think Blynda's son has a different antiemetic.  

The key to ending a cycle is deep sleep.  

My daughter would usually dehydrated quickly.  She tended to start a cycle same time as your son, vomiting would occur every ten minutes exactly, and within a couple of hours she was vomiting blood.  We were off to the hospital around that point.  Her meds usually including thorazine, an antianxitey (can help with nausea) med, an antiemetic, something for the acid, and probably other meds.  If she was placed properly in a deep sleep, the vomiting/ cycle stopped and if she slept solid for a day or two, she was good as new.

If you are not able to totally stop the cycle, it can pop back soon.  It might seem like a new cycle but it is often a continuation of the prior cycle.

Keep a journal for triggers.  Pork is an easy elimination but barometric changes, excitement over a birthday party, worries about school, a cold or allergy, etc. can all be triggers.  There are things you cannot control such as the weather but if you know hot humid weather is a trigger, you can take measures to decrease exposure or adjust meds as needed.

Some of the kids are doing well on the Supplements.  Ask the doctor before trying even these products.

We did have one youngster with what seemed to be very typical CVS cycles.  It was found much later that he had waxing and waning appendicitis.  Others have had a kidney condition (UPJ disorder, reflux, more).  Blood testing during a cycle is suggested to rule out a metabolic condition.

Best to you and please let us know how your child is doing.



His history is just about 2 months with it - and it has been really bad the last 6 weeks.  The doctor did test to rule out crohn's  disease and something else but I'm not sure what it was. I'd have to ask my wife. We have had a cycle start at 1am - 2am - 4am and he also had one at the GI doctor last friday. at maybe 8am. This one didn't last very long and only vomited 3 times  but no diarrhea.  The diarrhea is hit or miss sometimes he has it others times he doesn't. Other than the **ml of Cyproheptadine  he doesn't  get any meds for it - we don't give him anything for the Diarrhea .  His typical bowel patterns is every other day or so , almost always solid.   During each episode he vomits about every 10 minutes.    

Are you saying that the episode he had yesterday morning could be part of the Friday episode?  I will add that Walker is a ball of excitement and has been for all his life.  as you hinted to birthdays - he is very excited for his that is 2 months away.  

I'm going to check out the research tab on the CVSA now.     Attached how he looks after the episode.  

2 of the photos are after the episode - one is before and he said it was really bright outside and wanted to wear his sun glasses.. I didn't know at the time but I guess this is a sign.  20170506_094350.jpg  20170701_112020.jpg  20170711_061314.jpg

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ginny

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Reply with quote  #5 
Poor baby.  He looks so miserable.  The pattern certainly sounds like CVS.  Yes, if he did not truly end the last episode, this could be a part of the same cycle. I am not a doctor, just a volunteer mom who dealt with this for a long time.

Please be sure about all the testing and keep testing whenever he is at the pedi for this or admitted.  Finding a true answer is usually a for relief.  Sleep, and for us it was medicated sedated deep sleep, is thought to be the only way to reset the brain.  With light sensitivity he could have a migraine component which might help the doctor to target the correct medication.

Blynda will encourage you to also see a neurologist, and I think that doctor was the biggest help with her sons CVS.  We did best with just the family doctor although we did have specialists at a Children's Medical Center.

If you can meet with or have your doctor conference with one of the CVSA Pedi Medical Advisors, it might be very helpful.

He is a darling child and it is so sad to see him so sick.

Please also ask the CVSA office to send you a patient pamphlet and a professional pamphlet to your treating MD.



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ginny CVSA Moderator
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wynnak

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Reply with quote  #6 
Ginny is always so good with the informational side of things. [smile] 

I absolutely agree on making sure your son has had all the rule out testing and that it is done correctly. We had a family member that their child was also diagnosed with CVS and it turned out to be a much bigger issue. They almost lost their child because the testing was not done correctly. A couple months seems fairly quick to get a diagnosis. Ours took years. That is why we are suggesting more. 

The pattern does sound indicative of CVS. And boy do those pictures bring back some truly awful memories for me. So I am sorry that you guys are going through this.

I do encourage a Neurologist. That worked well for us, especially with light sensitivity during an episode. That is fairly typical, but more so with people with migraines. At one point we had BOTH a GI and Neurologist.

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Blynda
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