wife to Jake, mommy to my 3 crazy munchkins, Lily (7), Jonah (5.5) and Kate (4). Taking this crazy blessed life one day at a time.


Cyclic Vomiting Syndrome

Kate has been having more "episodes" lately. Her most recent one was just this past week. She has already had 3 or 4 just since she was "diagnosed" with cyclic vomiting syndrome. I say "diagnosed" because there isn't really a way to diagnose this. It's what they think it might be, but we need to be watching her and keeping track of her episodes and looking for any changes. If anything does change, then she will be evaluated again, get other tests done, and we'll go from there.
Since this last episode, I have been feeling frustrated with this whole thing. I read lots and lots of articles about cyclic vomiting, but really they all say the same thing: there is no real way to diagnose it, there is no cure, there is no known cause. The only thing they know are the symptoms. But those same symptoms are also the symptoms to other things... So, it's been frustrating. Watching Kate go through this is heartbreaking. It is honestly the strangest thing to me: throwing up first thing in the morning, from anywhere between 15 minutes to nearly 2 hours. Then she is completely fine the rest of the day. Then the same thing happens the next morning. So strange.
Like I said, it's been happening more frequently since we were seen at Children's hospital back in October. Each episode has also been a bit different, not following the same pattern that we had seen in the past. This has been concerning me a lot. So much so that I contacted the neurologist that we saw. She helped me to feel a bit better about things, but thinks that I need to continue to keep track of her episodes, timing of them, and the other details of her episodes (which I already do). Some of those details, if they happen again, would mean an immediate trip into Boston. Also, the next time she has an episode, she needs to get labs done again to see if it is a metabolic disorder. I wasn't able to get those labs done during her other episodes because they only lasted a day or two.

I am frustrated too because I don't even know if this is what she has. They say that there is usually a "trigger", but I can find nothing that would be a trigger for Kate. 
Needless to say, I have had a little knot my stomach about this. I hate this wait and see game. We do have a follow up appointment at Children's hospital (in Peabody this time, not Boston) in 2 weeks, so I am really looking forward to that appointment, maybe getting more questions answered.
But for now we wait, until Kate's next episode, which will probably be within the next few weeks, if it continues happening as often as it has in the past few months. Please keep Kate in your prayers, that we can figure out what is going on with her, and be able to help her.

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Anonymous said...

We're praying, Lauren- For Kate and for you! I can't imagine watching one of the boys deal with this, and then the worry..... She's beautiful, smart and thriving! We're praying and we love you all!

Myssie said...

My son also has CVS. He was diagnosised three years ago. He didn't really have any triggers either and he will vomit everything for about 2 weeks and then he was fine. Our GI doctor prescribed an antihistamine for home to take every night before bed called Periactin. The Periactin helps to prevent future episodes. The Periactin has worked great for us and just had his first episode in 2 years. But I agree...CVS stinks!