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Welcome! The first 6 posts on this blog are actually e-mails I sent out to friends and family as updates about my 6-year-old daughter's diagnosis with Cyclic Vomiting Syndrome. They are letters to our biggest supporters and all those people who love our Ellie dearly. If this is your first time here and you want the whole scoop make sure to begin with the post called "First Update: After the Storm." Click Here.


Tuesday, April 30, 2013

First Update, After the Storm

October 23, 2012: 
Hey, for those of you who didn't know, here's a recap:
Ellie was vomiting about once, sometimes twice a week during the last month and a half of summer. That's when we started seeing a GI doctor. We have been on meds since then. I tried taking her off dairy and 50% off gluten for a few weeks and got great results but the GI doctor said not only did she think it was unnecessary, it would actually screw up an intestinal scope that could check for things like celiac disease if we ever got to that point. So, I let down my guard completely the last few weeks, let her have the normal amount of dairy, gluten etc (but felt nervous the whole time). Kept up with the meds, tracked her pooping (constipation was a concern for the vomiting...)....then....

Almost two weeks ago E had to get picked up from school for vomiting and it was INTENSE, puking every 10-15 minutes, I thought for sure this must be a stomach flu not her stomach issues. But, she did have cheese pizza the night before and regular milk in her cereal that morning. But no one in class was sick, no one in class caught it, none of us caught it and a few hours after the hardcore horrible puking episode (which lasted about 2 hours) she was better and asking for food.

Then yesterday we went for a lactose breath test. It was to test to help us determine if she is lactose intolerant. She did fine during the test and it came back negative (in some other e-mail remind me to tell ya'll how amazing my kid is...relating to this test in particular I mean). I knew not to dump greasy food on her right after the test but I did let her have kraft mac n cheese for dinner last night which she hasn't had in ages.

About 5am Ellie was crying that her tummy hurt "so, so bad" then a little while later she vomited. Typical "Ellie stomach issue" type puke, hardly any food, all watery and bile but vomit nonetheless. Then again about 15 minutes later, then 10 and pretty quickly it was like her stomach was convulsing and couldn't stop. She was literally (no exaggeration, ask Brian) vomiting, or trying to, every 2 minutes. It was AWFUL to watch. She quickly ran out of steam, couldn't talk, couldn't open her eyes, we had to hold her up to puke...scary stuff for this mommy. So after we endured about an hour of that I finally said, "that's it, I'm taking her to ER!" Laid her in the backseat and went.

It didn't stop till we got meds in her at the ER. ER people were great, I mean, it would be hard not to because she looked so awful, couldn't open her eyes or talk and every couple minutes started "puking" but just spit and mucus came out. They did so great taking us right back, everyone was telling her it was going to be better soon, calling her "peanut", getting blankets/towels, and I think we saw the doc within about 20 minutes of being there and the meds within 10 minutes of that--uber fast for ERs in my opinion.

As always, there is no way to know for sure if it was a food reaction or a flu, and only the next few days will help us know...things like how fast she recovers and if anyone around her gets it. But, I had some choice words for the GI doctor this morning. Choice. Words. Of course there is always a little part of me that worries it is just the flu, every time this happens I question myself, my gut.

She is scheduled for an endoscope on Friday. Should help us determine if she does have celiac disease or if she is actually having an allergic reaction to dairy (the breath test was just for intolerance, as it turns out--choice words--and this sort of reaction would be more allergy-like).

I am super grateful for such a great experience at the ER this morning and super grateful that we've made some great friends in the immediate area who can help out. Very grateful neither of my kids have any sort of horrific disease like cancer, I couldn't handle this on a regular basis! Also grateful to have some family nearby (last week during Brian's ER visit Uncle Terry was "on-call" for middle of the night duty and Marylisa took Colin for like 6 hours while that all went down!). All of our friends have been amazing these last two weeks, amazing. Lots to be glad about.

Anyway, I wanted this to be fast and of course it's not... sorry. I'll keep you updated.

Love, love.

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