What We Have Learned

It has been a while since my last post. Why? Because I guess when things are going well I don't prioritize this blog. I don't know if that's right or not...I suppose it's not going to give me many loyal followers. The thing is, when Ellie is well my energy seems to flow away from worry and concern and on to more "normal" kid stuff. Anyway...

It's been a while. Ellie was healthy, well, "normal," without any major episodes from October all the way through mid-February. IT. WAS. AMAZING.

A moment I will probably never forget: Brian and I are cooking/cleaning in the kitchen (this was in January) talking about needing to refill Ellie's meds. I say to Brian, "You know, I don't think Ellie has stayed this well for this long in years." And we both stop what we are doing and Brian says, "Actually, I don't think she has EVER been this well for this long." I agree and we both feel a rush of gratitude.

That moment should have inspired a post. In my mind it did, a post about what or why I think she is doing so well just in case any other CVS parents are reading this blog. You know, maybe it would help at least one other family. But of course life got busy and "write blog post" kept getting pushed down on the todo list. Here is a version of what I would have wrote about:

1. Knowledge is key. Now that we better understand CVS and her Mito disorder everything has changed, but not really anything major. Her system is just super, super sensitive. Too much excitement, too much anxiety, not enough sleep, and encountering a virus--these are the big triggers. Kids with CVS should get AMPLE amounts of sleep. There shouldn't be big surprises (that is sort of sad, but not a huge deal if it saves us from an episode). Big anxiety, such as the beginning of the school year, being in a performance of some sort, and for Ellie we can include thunderstorms, sleeping alone, someone being hurt, etc, this sort of "stress" can kick off an episode. Another thing we learned this year is that becoming overheated is really hard on E. Also this year we are figuring out she needs to be reminded to drink enough water and have something to eat every few hours. 

How does this look in real life? Luckily Brian and I seem to have adapted pretty well in the last year and a half. Yes, that's a little pat on the back for ourselves but it hasn't been easy adjusting so I'm ok with giving us both a gold star! It has become second nature for us to steer clear of triggers. To the chagrin of many, we change and shift plans on a daily basis depending on how she seems to be doing that day or week. Normally we start the bedtime process by 7 in hopes of her being asleep by 7:30 or 7:45. We literally never know what kind of a night she will have so it's important that she is asleep before 8pm and actually that is probably too late. We almost always have to wake her at 7am. Other things: I carry water and snacks everywhere we go, as well as her meds. I send notes to her teacher asking her to remind Ellie to take snack/water breaks, I also give her teacher a heads up if she is in a bad spell so she can lay her head on her desk for a little break mid-day if needed. We have learned to make Christmas a very LOW key event, as low key as we can anyway--a very hard task when you have little kids at home. Traveling is super hard on Ellie so we are really careful (and nervous) whenever we go places. She eats poorly when traveling (oh yes, and eating--she has to eat really healthy, balanced meals all the time because she is so prone to constipation and inevitably constipation leads to an episode)... back to traveling--eating poorly, sleeping badly, extra excitement--it almost always throws her body for a loop. 

But the good news is that Brian and I agree that living with constant attentiveness to the balance that Ellie needs, well this is just how life needs to be. We both know how and when we have to adjust schedules, events, change things up last minute and we just do. Our close family and friends are super supportive and accommodating. For example, we had to have Brian's Mom's birthday dinner at 4:30pm last weekend because we were out in the suburbs and in order to get back in time for her to get to bed by 7:30, well, we basically had to have a late lunch or early dinner. There are no "just this once" moments for us because there could be special "just this one time" events almost every weekend, even more in the summer, so bedtime has no room for flexibility. I can absolutely promise you that this hardcore or strict approach for structure in our day--this does NOT come naturally to me, at all. See, so it's ok for me to give myself a gold star. :-)  When people don't truly understand the importance or reason for being so careful about keeping Ellie's life in total balance... it's then that I have gotten a few eye rolls or confused looks or "is an hour really that big of a deal?" But, such is life, right? She and Colin are my biggest and best job and certainly I'm going to move mountains to keep her well, so yep, for now an hour is a big deal.

I know that as she gets older and can make good choices about her time and energy, when she can read her body signals better, then we will be able to loosen up a bit, but for now... if you have a little one who has CVS, one of the best things you can do for them is provide super structure, tons of sleep time, good healthy meals and a relatively calm space to call home. Don't overdo it on vacations or after school activities and pay attention to their cues--dark circles under their eyes, hands on foreheads (headaches), laying their head down at mealtime, low-grade fevers, mood swings, low energy, pink cheeks, glassy eyes, holding their stomachs, not wanting to play or talk much, etc, etc.

2. Her medicine has made a huge difference!
I can't say enough about the difference her medicine has made for her. Ellie takes a lot of stuff, but it's all worth it. She started amitriptyline soon after she was diagnosed and this year she began Co-Q-10 and L-Carnatine. She also takes allergy meds and melatonin and daily vitamins and iron. I saw the most obvious change in her soon after we started on the Co-Q-10 and L-carnatine. It helps her energy, stamina significantly and it was a visible transformation over about a 2 week time span. If you have a little one with CVS or mito-disease, I highly recommend trying these two supplements for a month and see if it helps at all.

Ironically I had been feeling a little unsure of her amitriptyline. It's technically an anti-depressant but it's used as sleep medicine and body relaxants for all sorts of disorders. Actually my Dad took it for a while after a bad accident he had a number of years ago to help him relax and sleep. But you know, it's never fun to think of your little kid on a medicine for an extended period of time and in the last few months I was starting to feel like I had no idea if the amitriptyline was really necessary or not. This was also a result of her being so well for so many months in a row. I started thinking, 'How will we ever know if she doesn't need it anymore? What if she outgrows the CVS part of this disorder and how will we know to take her off the medicine?'    Then mid-February happened...