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Ktwood

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Reply with quote  #1 
Hi there!
My daughter's GI doctor prescribed her periactin to help with her vomiting symptoms. We were told it would increase her appetite and make her drowsy, but all it did was make her more nauseated and the minute she drank her second dose she vomited it right back up. Has anyone else had this reaction to it? Her doctor seems to think it is very uncommon and maybe her reaction was from a stomach bug and not the medication itself. I am scared to have her go back on it. She couldn't eat for at least 3 days and constantly complained that her tummy felt weird and upset.
Right now CVS isn't a clear diagnosis for her. We also saw a pulmnologist who thinks her nighttime/early morning vomiting could be asthma related. But after almost 3 months on inhalers, i am really not seeing improvement. We are seeing a pediatric neuro in a few weeks and she is having her tonsils and adenoids removed in august. All of her GI tests (barium swallow, endoscopy) showed nothing and were all normal. Is CVS just a diagnosis they give when everything comes back normal and they can't figure it out? Just trying to to figure out what is going on with my little girl and can't seem to get a clear answer from anyone.
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wynnak

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Reply with quote  #2 
Was the occurrence after the Periactin different from previous? I know it is hard to retry something that she has seemingly reacted to. But really you may try it and she if it was. We tried different meds sometimes multiple times. But it is truly a way to figure out if it was what set her off.
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ginny

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Reply with quote  #3 

on the diagnosis side of things, the symptoms of CVS vary greatly than the typical allergy or asthma type of vomiting.  Have you been able to review the Empiric Guidelines on the CVSA web site and the NASPHGAN study?  You can learn more about CVS there.  Periactin is usually more effective in the under age 4 population but some older children use it.  I don't blame you for not wanting to try it again.

I am also confused about a daily preventative medication that has side effects being used in a non diagnosed child?  

With CVS there can be normal studies or sometimes there are testing findings related to the vomiting damage on the body.  

CVS is said to be the most severe kind vomiting misery known.  The CVS patient often can tell an episode of CVS from a stomach bug, can sometimes know that he or she will vomit again in 5 minutes or 10 minutes or even have episodes that come every 45 days or 17 days-- some kind of pattern that can be counted on (at least until the pattern changes again).  The typical cycle hits very early AM often waking the person in the middle of the night, and each cycle typically resembles the previous cycles.  Some parents can detect an odor on their child or tell from dark under eye circles, white or flushed skin, or other tell tale signs that a cycle is impending.  On occasion, with warning signs and proper medication, the cycle an be aborted.  

A lot of this is in the Empiric Guidelines.  

Please let us know if you get a clear diagnosis and how your child is doing.  Seeing a neuro is an excellent idea as well.



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ShannonS

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Reply with quote  #4 
My son has been on Periactin for about 14 months now, and was diagnosed with CVS after 8 near-identical episodes of profuse vomiting over a period of about 14 months.  He was 5 1/2 when diagnosed, and is almost 7 now.  When he began Periactin, he experienced lethargy and drowsiness in the beginning, and maybe some nausea (but he's nauseaus a lot on or off the medication), but it did increase his appetite (a good thing, considering his growth stopped during the development of CVS). 

After about the first month on Periactin, he regained his energy and his appetite stabilized, and he returned to "normal".  He's only had one episode of CVS since starting Periactin (possibly two, but one was a much milder episode than normal), which coincided when he started a different medication for another condition.  

Initially, our GI doc advised us that in about a third of his CVS patients, Periactin works great and eliminates episodes - in another third it reduces the impact of the episodes (reduces frequency or duration or intensity) and in about a third it doesn't work at all.  That's all antecdotal, but it helped prep me for the possible outcomes of using it.  In my son's case it has worked so well I'm nervous to take him off of it. 

That said, all this info is in our case - which seems like a it was a pretty clear case of CVS, which resulted in an effective course of treatment.  Initially, our pediatrician wouldn't refer us to a GI doc until my son had 5 near-identical episodes of vomiting (in his case, all profuse vomiting over 5-6 hours, beginning in early morning).  Our son's case seems to be a text-book version of CVS, so after the 5th episode, the referral was immediate (unfortunately three more episodes occurred between then and actually getting in to see the GI doc).  All and all it was a long, hard wait to get the diagnosis, and none of our docs questioned it (or us) after the 8th episode.  I hope in your case you don't have to go through that, or wait that long, or end up with it as a diagnosis - but I also know what a relief it is to have answers.  I hope you find answers soon.  

Good luck!
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Cat

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Reply with quote  #5 
Hi there, I ran this by my partner who is a clinical pharmacist at a major hospital. He says that nausea and vomiting are known and documented side effects of this medication. So no one should be surprised by them. It was a good choice of medication, but if it's not working for her then you need to use something else, it's that simple. CVS is probably a good diagnosis for her, but you really need to see that neurologist, as they're the only ones who can really make that diagnosis, not the GI docs. Finally, the asthma connection sounds tenuous. Was there any evidence for it? And why is she having the surgeries? Unless she has major, existing problems with her tonsils or breathing, they shouldn't be looking to remove them. (I mention this last part because I've seen a lot of predatory ENTs/oral surgeons try to sell people on tonsil/uvula/turbinates surgeries for their kids when it really isn't indicated, just my two cents, but always get at least a second opinion before subjecting her to serious surgery.) I hope that you find a better med, keep in mind it will take a few weeks to see the effects, and get in to see that neurologist soon.
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Ktwood

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Reply with quote  #6 
Thank you all for your responses!
A little background :
My daughter's vomiting issues started when she was 3 and mostly when she would get a cold virus. And without fail on Christmas eve. She would always wake up coughing and vomiting up mucus and sometimes the contents of her stomach. By kindergarten these episodes got worse and every time she would get a sniffle she would be up at night coughing and vomiting up everything she had eaten. It was intermintent and never really followed a predictable pattern. Her vomiting could last several nights or just be one night and go on and off for weeks straight, or we could have a whole month without. She is 6 now and in the past 2 yrs we haven't made it 2 whole months without a vomiting episode. Her pediatrician recommended we see an ENT and a GI specialist . The ENT ordered a sleep study and scoped her and determined that she has a mild case of sleep apnea and her adenoids are very large. Hence the surgery. After the barium swallow study and the endoscopy which came back normal, the GI put her on periactin to see if she would have any improvement and referred us to a pulmonologist and the neuro. The pulmonologist believes she has cough variant asthma and that is the source of her vomiting. So we have been trying a steroid inhaler and rescue inhaler to see if that helps with her cough which may be the possible source of her vomiting? But even after a month on that we still had two more boughts of vomiting when cold symptoms were present. I am lost and confused and everyone seems to be going in a different direction. Was just hoping to maybe connect with other people to see if CVS is even a logical diagnosis. Her pediatrician doesn't seem to think she has the classic symptoms of CVS. Will the MRI the neuro orders tell us for sure if it is or is not CVS?
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ginny

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Reply with quote  #7 

To me, this does not sound like CVS.  I think CVS might be getting into one of those catch-all diagnosis-- there is no test to diagnose CVS and it is thought to be a functional condition.

For the coughing and vomiting of mucus, I have seen children diagnosed with asthma, during a hacking severe cough spell, trigger the gag reflex and vomit mucus, not often stomach contents or bile.  One of my kids was diagnosed with exercise induced asthma and as an adult she told me that further studies have her now diagnosed with bronchial spasms.  She seemed to have a pretty classic  case of exercise induced asthma, diagnosed as moderately severe by a Pulmo MD.  She would also have an "asthma" attack if there were other things going on.

For diagnosis of CVS, locally where we live (Boston), I have known Family Practices MDs, Pedi's, NP's, GI's, Neuro's, all diagnose CVS.  My best educated guess is that the most common source of diagnosis is the Pedi, who will often refer first to a pedi GI.  

As far as I am still aware, no true progress has been made in finding out definitely if CVS is one disorder or many different disorders categorized under the name of CVS.  It used to be that using pain or vomiting as a measure, the patient was diagnosed with Abdominal Migraine (pain) or CVS (vomiting).  Last time I said Abdominal Migraine to the president of CVSA, she paused and said it has been a very long time since that term has been used.  

It does seem that more ERs recognize Abdominal Migraine in adults and often have a better response to the need for pain medication.   Pedi ERs overall seem more responsive to the child regardless of the diagnosis.

Our daughters CVS was probably totally typical-- age of onset, 5. Onset occurred middle of the night and during an exciting time-- at a beach holiday.  I realized years later that while preparing for another beach holiday vacation my daughter had experienced a long headache/bellyache, over 2 weeks duration.  I do not recall much about that and I also think we had one other probably CVS cycle, again middle of the night, violent vomiting every 10 minutes.  

Without violent vomiting I am not sure if CVS is ruled in or not.  The Christmas Eve history is certainly a common time for a cycle.  

CVS varies so much from person to person.  Treatment can increase some symptoms due to side effects of many of the meds (in particular slowing of gut motility which already often slow down as a cycle approaches; research shows that in general, motility is increased in the CVS patient except during the prodromal phase).

It does sound like the doctors are going in all different directions.   The doctors involved can all meet to discuss your daughter, even if they need to have a remote meeting.  

The NASHPGHAN study will help you with matching her symptoms to the suggested tests.

If the CVS diagnosis sticks, your diagnosing/ treating MD might contact a CVSA Medical Advisor.  If you feel that CVS is the correct diagnosis, an appointment at the CVSA center should be helpful and would probably be a one time thing. 

Even at major pedi teaching hospitals, doctors will vary in skill level.  The good news is that if your child does have CVS, she should do fine in the long run. 

With the sniffles and colds being a trigger, I think the ENT evaluation is important and another excellent choice.  

Other tests suggested are an U/S to rule out certain kidney problems that can be sporadic in nature but have similar symptoms to CVS, as well as metabolic blood work best performed during a cycle.  

We did have one little guy with very typical CVS symptoms who was found to have had waxing and waning appendicitis.  He was fine after surgery.  


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ginny CVSA Moderator
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wynnak

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Reply with quote  #8 
Ginny, Great info!

I have seen people that have needed ENT intervention. They were misdiagnosed with CVS when they had some sort of infection in the ears nose or throat. I can see where the doctors would see CVS relation due to the cold or virus setting it off. But, I will say from experience, that it cant' hurt to have it all evaluated. 

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