Cyclic Vomiting Syndrome (CVS)

[RunnerKim]

Does anyone have experience with this illness? My son (2.5) was just officially diagnosed with it. I posted here back in May about the symptoms my DS was having. Thread: repeating illness (http://community.cookinglight.com/showthread.php?t=104930)

I thought I'd post a follow-up to that post now that we have an answer and also see if anyone out there knows about CVS.

We went in to see our pediatrician in September and I was able to take in a list of 7 dates starting from June 2006 (when Jamie was a little over a year) of when he had this mysterious vomiting. She went off to her office and came back with an article about CVS and read it to us and it was right on what we'd been experiencing. In part we were quite relieved that our gut instincts about "something" going was right. Individually the episodes could be written off as a virus or whatever but thankfully I could go back through weekly emails I'd sent to my MIL and find the series of dates.

I haven't found anyone with personal experience or even knows about this illness (and that includes several daycare teachers with decades of experience). Although I think most kids are diganosed when they're older. We're fortunate to have figured it out as quickly as we have.

Kim

[buffygirl]

(((Hugs))) I've never heard of this before, but just wanted to say sorry. Sounds like your son is on the road to a solution though, so that is good.

[Terri_A]

Kim, I'm glad to hear you have an answer - not knowing is sometimes the worst! So, is it something that is treatable? I've never heard of it!

[RunnerKim]

We have a follow-up meeting with our doctor later this month so I'm sure I'll know more then. She indicated the last time we were there that if it was CVS that there wasn't much available to treat it because he's so young. When he's older (might just be age 3) then there are medications available but they've been known to cause kids younger than 3 to stop breathing :eek: (not exactly something I'm eager to try the day he turns 3 either).

I believe there are medications that are used to prevent episodes altogether (but they have to be more frequent than Jamie gets them) and other medications that are used once an episode starts. From what I've read none of them sound highly effective. I've also seen some references to using things like benedryl to help the child sleep (and perhaps if he falls asleep before he starts vomiting then he might avoid it altogether). Jamie does have a phase called "prodrone" where he feels pain but hasn't started the vomiting. It lasts about 30-60 minutes so if we could give him benedryl right away maybe.....

Many kids do outgrow this in adolescence so we're hopeful for that. Although it sounds like for some at least it morphs in to migraines (which I've discovered there's a family history of on both sides of our family during the teenage years).

The main thing is keeping him hydrated while he's vomiting and fortunately Jamie wants to drink so now that we know that it doesn't matter whether he drinks or not he continues to vomit then we do a much better job at keeping him hydrated. I think most kids that have this and get hospitalized is because of dehydration (and/or their vomiting episodes go on much longer than Jamie's - up to 10 days :eek: Those poor kids.)

Once it's over (for Jamie it's about 24 hours) and he sleeps for another 24 hours he's 100% normal and that's really good too.

I do like to be able to plan things and at least this is a plannable condition :rolleyes:

Kim

[___Rhianna___]

We (my sister and I) sort of self-diagnosed CVS in my niece when she was about 13 or 14. She would have episodes like the ones you've described, and I don't remember all the specifics now, but all her other symptoms, the timeframes, etc., seemed to fit according to all our internet research. My sister strongly dislikes taking her kids to the doctor unless it's a dire situation, but she did finally take her in for this. The docs were not much help--claiming it was a stomach virus, or nerves, or who knows what else. My niece grew out of it after a few years and hasn't had any episodes in quite awhile (she's 17 now).

Best wishes to your son--poor little guy. :(

[RunnerKim]

Rhianna - thanks for sharing! It's good to hear of someone else having dealt with this (and better yet that she outgrew it). Our pediatrician did indicate that this has a really high mis-diagnosis rate. I'm once again quite thankful for our pediatrician - once we went in with a series of dates she really listened to us.

Kim

[Terrie53]

Kim,

Although it is difficult to watch the pain your child is experiencing now, it is hopeful that it is something he can outgrow.

Poor little guy, and poor Mom, too. (((Hugs to both of you)))