We went a week ago today and I think I've been putting off this update because I needed to let it all sink in first. Also because I don't know how to organize both the information we got as well as my thoughts about it.
Reader's Digest Version:
1. We met with the doctor who is the head of the clinic and the guy we affectionately call the "CVS Wizard" for almost two hours, then we met with a developmental psychologist who only works with CVS patients and their families for another hour and a half. All in the same room... let me just say, if my Dad hadn't driven down to be with Colin during all this I'm not sure what we would have done. Thank goodness for loving and dedicated grandparents!
2. Ellie has the following diagnoses: CVS, abdominal migraines, IBS (irritable bowl syndrome), a sleep disorder, general anxiety disorder and a mitochondrial disorder. Having him list all those things and say it all out loud like that was a little overwhelming but in reality, calling it by real medical names doesn't change anything we already knew, simply affirms that Brian and I aren't crazy, overly-obsessive parents who are just looking for something to be wrong with their kid. In fact, on more than one account he praised us for our intuitiveness regarding Ellie's health issues and needs (and during those moments I got teary).
3. The stats are something like:
80% of CVS kids also have abdominal migraines (truly a migraine but in your abdomen, pain) .
55% have sleep disorders
30% have generalized anxiety
(Wow! That made me again feel affirmed, not crazy, etc, etc)
4. The abdominal migraines and the mitochondrial disorder stuff was the most interesting and helpful for me to hear. Up until that point I thought that CVS and abdominal migraines were basically the same thing. But Dr. Li said that in fact they are different, and let me tell you, it totally explains our spring last year! More on that in the extended explanation below.
5. The mitochondrial disorder was total news to Brian and I. BUT, last year I had read about a child with CVS and "Mito Disease" and immediately thought that it that sounded like Ellie. Then when I read more about it (at the university of google) I put it out of my head because it all seemed so extreme compared to our Eleanor. But in fact, Dr. Li is 99% sure that she does have it. Remember, he has studied every medical test Ellie has ever had and had us fill out a thick packet, write a five page health biography, talked with her doctors, etc., etc. He said she meets all the marks for it. The only way to truly diagnose it medically would be to take Ellie to the hospital the next time she has an episode, while she is vomiting (give her no meds), to get her blood and urine tested. It has to be taken while the episode is happening... NO THANK YOU! We'll take his word for it!
6. What all of this means is twofold: Part One--More meds and some real fancy (read: expensive) vitamins. Part Two--continuing to adjust our day to day to find our new normal so that Ellie can stay well and be an active participant in all the normal childhood stuff (school, extracurricular activities, sports, etc).
Here is a great link (pdf) all about the Mitochondrial disease aspect in kids with CVS: click here!
That is the end of the reader's digest version. Read on if you are more curious and if you don't mind a little emotional mother stuff...
Here is my quick explanation of the article above:
Basically what this means is that Ellie's body can't always create the energy she needs. Mitochondria are the things inside our cells that produce energy and Ellie's don't function like they should, or as well as they should. What this means for Ellie (how we've observed it in Ellie): She gets tired more quickly than other kids (lately her tiredness shows itself in major mood swings and lots of laying on the ground or head down on the kitchen table during meals etc.,). She gets pale and lethargic as a child would who is getting the flu or something like that, but no virus or flu ever come. She has a lot of pain in her stomach, she is constantly fighting constipation, she very quickly overheats, last year she had a lot of general exhaustion and stomach pain in the mornings in particular. Because of all this she needs food at more regular intervals, she needs to maintain hydration more than other kids her age, she is a sitting duck for infections and virus', she needs to sit down and recover from physical exertion quicker than other kids and according to the doctor physical exertion doesn't feel good like it does for you and I, she needs a significantly greater amount of sleep than kids her age, and on and on.
"But what does this really look like? I mean Ellie seems ok to me, I don't understand?"
Here is a perfect example of what this actually looks like:
Her first day of school this year: She was obviously nervous and excited (triggers) and didn't sleep well because of that (trigger). It was at least 90 degrees that day (trigger) and I didn't know what parts of school were or were not air conditioned. I didn't know if her teacher would let them keep water with them, or what or when they might have snack. I felt nervous but I didn't want to be *that* parent--the overly nervous Mom. In the afternoon I succumbed to my nerves and called the school. There was an air conditioner in her classroom and they would have her sit out for gym that day. And thank goodness because when I picked her up from school she was a hot mess! She was pulling on me, whining, begging to go home, sitting on the grass, laying on the grass, dripping with sweat, flushed and eventually crying. Now here's the thing, that's not unique for a little kid at the end of a long, hot day at school. So as her Mom (and previous to our appointment with the wizard) I felt so conflicted. I was trying to talk with parents after school and she was interrupting, whining and even laying on the ground acting seemingly quite dramatic--I was annoyed. We walked around to the back of school with the other families, where the playground is, because Colin wanted to play for a few minutes and I wanted to chat. Most of the kids were running around playing despite the heat (so it was warm, but not debilitating for most kids). Ellie was being "rude" to her friends. Not responding to their calls to play, not giving anyone eye contact... she was shutting down. So we were the first to leave and only after a few minutes. When we got in the car she pretty much stopped answering my questions and looked like this:
When we got home she said she wanted to drink ice water and lay on the couch the rest of the day...and that is pretty much what she did. Now that we have a medical name for it, I feel so much better. I feel like a weight has lifted. After school that day I felt embarrassed and annoyed with Ellie and super confused about when (as her Mom) I need to tell her to suck it up and when I need to "give in." On that day and a LOT of days last school year, I felt like, 'what is up with her? Is this all from poor sleep?' It always felt (feels) like Ellie was on the verge of being what I like to call "overcooked." In various situations other kids seemed ok and she was totally dragging (physically, emotionally, or both). That is how I ended up reading a little about Mito Disease last year. It was in the spring and I was feeling like, 'there has got to be something more to this.' At least once a week she would wake up with bad stomach pain, asking for medicine. For a while in the spring she was missing school once a week and I had major trouble explaining exactly why. She wasn't necessarily throwing up but she was exhausted, in a lot of pain and often had totally unexplainable fevers. Our family would pass a cold around that would last about a week or so, Ellie's cold would hang-on for weeks and weeks and eventually she would need antibiotics and an inhaler.
I was certain Ellie's very sweet kindergarten teacher (along with a lot of other people) thought I was a crazy Mom, one of *those* moms. Luckily for my Ellie, and yet another lesson in all of this, I didn't care enough about what other people thought to NOT follow my gut instincts. And luckily for both Ellie and I, her kindergarten teacher was GREAT! She believed me, she listened and was supportive. We were late all the time for school, she missed something like 30+ days of school last year and I had no name for any of it except that she had "CVS." But you see, CVS would not explain all this other health stuff, it is only a description of her vomiting episodes... So, if she isn't actually having a vomiting episode, then why isn't she in school? or at the birthday party? or at dance class? I just figured it was Ellie and too bad, I am first and foremost in charge of keeping her well so I'm listening to her body, I'm not going to push it.
And now there is a name for it!!! I am thrilled. There isn't much we need to do differently now that we have this new information. We are working on the sleep stuff (patch adams of dentistry!), the constipation stuff is a constant vigilant thing, we have plenty of meds and we were already trying to be careful about scheduling for Ellie. The psychologist talked a lot about families with kid's with CVS creating a careful balance of mind and body--sleep, excitement, over-exertion, good nutrition, etc. Not much (or anything really) should be a surprise for Ellie. We should talk about things well in advance. Things in our life should be slow, steady and deliberate whenever possible (that is going to take some adjusting for me--I prefer spontaneous, crazy and last minute, so does Ellie actually. With coaching from Brian, I'm working on it). Ellie and the psychologist talked a lot about the "stress monster" and how to stay in control of her own body. We do deep breathing exercises every night and positive imagery stuff before bed. The end goal of all of this is that Ellie does NOT have to miss out on school or sleepovers or dance recitals or any other normal kid stuff. The more we practice careful, healthy, balanced living and the more we teach her to be aware of her triggers, the more healthy she will be.
We want more of this:
And this:
And LESS of this:
And let me tell you...WE ARE OFF TO A GREAT START!!! She had her birthday and birthday party in August with no episodes! She had a rough first day of school but the other days seem to be better and better and no episodes! She is happier and more full of energy than I have seen her in well over a year. As far as Ellie's health goes...I am swimming in hope! Dr. Li said that summers are usually the best time of year for CVS kids but now that there is a real reason, a real name to all of this...I feel ready for this year. Plus, Ellie is on some good medicine (lots) and lots of vitamins that will help with the energy component.
Thank goodness for the Wizard and his team! It was a great visit.
