Update Number 4: The CVS Informative Update

Saturday, November 24:
I'm hoping this is the last news about Ellie's health for a long, long time.

While we do have one more semi-serious test to do, our GI doc doesn't think we will find anything abnormal. It's a test that has a name that I can't remember. She will abstain from food for so many hours, then drink some "sweet" stuff that will make her insides glow, then they will take a whole bunch of pictures of her digestive system from top to bottom to make sure her anatomy looks normal. It's pain-free and precautionary, but really the doc says we can now officially diagnose Ellie with Cyclic Vomiting Syndrome (CVS). That's the one we were hoping for (well, I mean, instead of EE) and it's the one we felt like really matched what has been going on with Ellie.


Our doc had some different things to say about CVS than the other articles we've read. Did I mention that his previous boss/mentor is the leader in international study of CVS (which by the way is located at the children's hospital in Milwaukee)?!? I think this probably helped him recognize it quickly, although he told me last week that our previous GI doc was also trained under Dr. Li in Milwaukee so why she didn't catch it??...grrrrrrr. Anyway, he told us that it's a lifelong condition, she will have it forever but it could change as she grows up. About half of the people who have CVS will stop having the vomiting and instead have migraines as they become teenagers or young adults. He also talked again about how this syndrome is so strongly connected to sleep issues (which as many of you know has been such a HUGE problem for Ellie for all her six years). He said the greatest precautionary thing we can do is practice diligent sleep hygiene.

He said CVS is a neuro-gut disease. Something in her brain is wired wrong and when she experiences any sort of "off" or "unusual" in her life, her ability to sleep well and deeply is off which triggers her brain to tell her stomach and intestines to start freaking out. How is that for a scientific explanation? So, her brain tells her stomach to freak out and the only way to push the reset button and stop the pain, nausea, vomiting is to "snow" her. That means make her fall asleep hard and fast. I worry I am boring you, but fyi, I have to say I feel like I could write a really interesting parenting resource about this stuff--meaning, it totally makes sense for Ellie. Over the summer she would puke, puke and then sleep (whether for 20 minutes or 2 hours) and wake up wanting to play and eat breakfast. I would always think, how are you playing with dolls and asking about the beach when you were puking 2 hours ago?? But last week the GI doc said that it is fine for her to be "snowed" at school (meaning drugged), sleep in the nurses office and then return back to her classroom (really??!!) because the light switch is turned back off and a lot of times kids with CVS do feel totally fine. Of course, getting to this place will take a while and take practice and maturity on her part. Her last bad episode when we ended up in the ER she was pretty wiped out for 2 days, but that's partially because we didn't know what it was, she puked about every 2-4 minutes for well over an hour and so her little body was exhausted. But then her last episode that I'm pretty sure we escaped, I quickly gave her the zofran, she slept and woke up fine. And, she hasn't vomited since then!! In fact, this is the longest stretch of no vomiting since all this started in July. One of our dear friends said, "she is starting to look like herself again, her coloring and her energy." AND, she has put on a little more than 2 pounds which is great because she'd lost at least 5 (which is a lot when you are only 45 lbs).

Her "off" or "unusual" feelings that could turn on that button in her brain are just normal things for you and I. Remember how so many of you wondered in the summer if she was feeling nervous or anxious about kindergarten?

Well, when we had the GI appt last week I was saying that I wish I knew why it happened once/twice a week over the summer. After talking/teaching me, it kind of all made sense. First of all, Ellie's birthday (exciting/puking) was at the beginning of August. Then she got to be spoiled by Gram and Grandpa for a week (exciting/puking), then she came home and we were counting down the days to kindergarten (super exciting, super puking). None of it was bad, in fact quite the opposite for her. She practically skipped into that kindergarten room, hugged us goodbye, told us we could go now, helped the other kids who were crying...there was NO FEAR whatsoever. But the GI doc says that is exactly right. It is any sort of up or down, not necessarily bad or scary (although that can trigger it too). He also said that it doesn't have to be any big events like those I just listed. He said--thunderstorms, a test at school, your team winning the game, Christmas, travel of any sort--pretty much anything that disrupts her daily "normal" could set off that button. He said while a counselor could help her learn to train herself to take care of herself during these big or little ups and downs, that it's not a psychological issue she has, it's a physical screw up in her brain. And in that sense we should know that as parents (and family and people who love us) there is only so much we can do. She still gets to be scared of thunderstorms and ridiculously excited about kindergarten, we just have to know that the best thing we can do is keep her life rhythm, ie sleep!, as healthy as possible while she goes through life. And, keep the meds on hand at all times. I don't know how they know all this, which leads me to my last thing and then I promise I'll stop.

He also asked me twice during our meeting last week if we'd be interested in participating in the research for CVS. I think we are pretty good candidates because we live close to Milwaukee (other families make appts to see this doc and fly in from all over the place) and because Ellie is still so young and seems sort of text book. Brian and I agree that yes, we'd love to help but only paperwork, maybe a visit or two to Milwaukee and definitely no more hospital tests unless she really needs it. But I have to say, it feels pretty good to say not only do we have a diagnosis (in only 6 months when the average is 2.5 years for a kid to be diagnosed with CVS) but also we could help with research for it. Probably I also feel so positive b/c she hasn't puked for a month...but whatever, we'll take it!!

This is from the website from Dr. Li:

CVS is one of the more unrecognized and misdiagnosed childhood diseases. It is marked by severe, recurrent attacks of vomiting in a child who is otherwise completely healthy for weeks or even months at a time before and after the attacks. Over the course of 24 to 48 hours, a child may have more than 30 vomiting episodes, occurring every five to 10 minutes at its peak.
Gastroenteritis is a common misdiagnosis of CVS, as are food poisoning, gastroesophagealreflux and even bulimia.
"With stomach flu, once the stomach is empty, the vomiting stops," Li said. "With CVS, the physical act of dry heaving will continue long after the stomach is empty. The drive to vomit is relentless."
Such episodes often begin in the early morning around 2 a.m. to 6 a.m. The child is non-responsive and pale, often curled in a fetal position.
The peak age for the first onset of CVS is 5 years. Sixty percent of those afflicted are female.

It's so Ellie! Ok, I'm done now. Lots of love and appreciation from me. Hopefully my next physical update will be about her breaking her leg during an amazing soccer save--ok, probably not Ellie, but something along those lines.