Wednesday, April 11, 2012

Life with Cyclical Vomiting Syndrome

This post is a little graphic, so if you have a weak stomach, you may want to stop reading.
Hard to believe baby girl just came off of a cycle, huh? Other then her eyes being sensitive to light (thus the sunglasses in the above pic) and a few bad diapers today, she's feeling great. It could've been the Easter Candy that brought this cycle on?...or maybe the recent trip to the beach? Regardless, it's done now and we're thankful.

I rarely talk about CVS even with my friends and family because talking about it doesn't change anything. Having said that, there are days when I need to vent, and depending on who bumps in to me first, that person will be the lucky recipient of my emotional over-flow. ;-) Most days though, I understand that unless you've seen LA throwing-up in to her dinner bowl repeatedly, or seen her wake up in the middle of the night covered in vomit as we have...oh...50+ times?, or wiped her bloody bottom - something I have to do multiple days a month,, than there's no way for you to understand what we're dealing with. So usually, unless someone asks me how we're doing and unless LA is in the thick of a cycle at that time, I'll just move along as if CVS doesn't affect our lives. Truth is though, it affects us very much.

I honestly can't remember the last time LA had a normal bowel movement. Diahrea is her norm. We know she's in a cycle when it literally won't stay in her diaper...usually it's containable. I can't tell you how many friends have gasped when they saw her diapers and initially I wonder why they're upset??...then I remember...oh yeah, most kids diapers don't look like this. Something you need to understand, is that she's on the VERGE of a cycle all. the. time. Her body is so ready to start having horrible diahrea and vomiting, that I feel like I'm walking a daily tight rope of keeping her well!!! The only reason LA isn't very ill or hospitalized frequently is due to the fact that we've figured out what triggers her violent cycles and have learned to stop them before they wreak havoc. What could trigger a cycle?...a simple 30 minute trip to the airport. A simple 30 minute trip to the beach. Staying at the Chick-Fil-A playground too long and her missing a nap. Being around strangers. Changing her diet. Too much sugar. Too many carbs. Being too excited or too upset. Honestly, we're still learning what triggers her cycles as she's only two and has SO MUCH yet to experience!

When we were initially given Lillie Anna's diagnosis of Cyclical Vomiting Syndrome (CVS), we were so relieved. Just to know what was causing know it wasn't infectious or know we could do something to hopefully keep the cycles at bay...well, relief is really the best word to express what we felt! And over the past year, we've learned how to have a functional life with a child with CVS by doing our best to avoid her triggers.

But we're also learning that we can't cut everything out that triggers her cycles. Try as I might, there are a few days a month when she doesn't get a nap. There are days when our family wants to go to the beach. There are times when I have to drive to the airport and she has to come too. And on those days...I hold my breath and pray that this time her body will react differently...unfortunately, that hasn't happened yet. Relentless nausea..relentless vomiting/gagging...relentless refuses sleep or rest or food or water until it is DONE.

CVS is like nothing I've ever's not merciful in the sense that it keeps. coming. back. And it's not well known so treating it is next to impossible...I feel like each time we try something, we're totally stepping out on a limb and taking a leap of faith (like when our Pediatric GI doctor recommended we put her on blood pressure meds, but admitted that he'd only had one other child as severe as LA and that she'd only be the SECOND patient he's tried this with...grrrreat.) There have been many moments when Chad and I have felt as if we're out alone on some weird island with our little girl and I think to some small extent, it's jaded us. There's nothing like watching your little girl panic because she can't BREATHE in between dry heaving when her little stomach won't stop trying to empty itself...seeing that repeatedly for two years will soften your heart and harden it at the same time. :-/

Chad and I are requesting prayers. We don't want to grasp at straws, but also don't want to ignore anything that could possible relieve her of this syndrome! We have two appointments coming up. On April 18th we're seeing a Pediatric Opthamologist...they're going to look at her Optic Nerve to make sure it's functioning properly. With her sensitivity to light, we just want to rule out that nothing is going on there that could possibly be causing these cycles. And in May, we are scheduled to see a Geneticists. Please pray that we gain new insight from these appointments.

I'm seriously considering trying a new diet with her that will be HARD. It's a "Simple Carb Diet" that we've heard from other CVS'ers can work wonders on this syndrome. Unfortunately, it involves NO grains whatsoever, NO sugar and NO processed food - Lord have mercy. Her triggers seem to be stress related, NOT food related...but who knows? I know it would be doable and if it truly helped her, we would stick with it, but it would be challenging to say the least.

We realize we're one of the "lucky ones" many people with CVS are not diagnosed until they're adults. We're incredibly blessed to have found a Peds GI doc who is very familiar with this syndrome. We're also lucky that we can mostly avoid LA's triggers - many people with CVS are unable to figure out what causes their cycles and are in a relentless endless miserable cycle day-in-day-out. Thank you God for giving us answers and direction thus far - please friends, pray that He will continue showing us what to do next!


Kathryn Mick said...

Wow. Had no idea how intense this was. My first choice in prayer is simply for healing. Knowing that God is God and I'm not, next in prayers are relief from discomfort for LA and you and Chad, answers for prevention and treatment, wisdom, courage, patience, hope . . . I admire you and Chad so much. You're accomplishing amazing things as parents and people of faith.

Page said...

I was wondering how LA was doing...I'm so sorry to hear about her struggles. I'll certainly pray for healing and strength for you all!

My Love Times Two said...

Sigh...just makes me feel so sorry for that sweet baby. (and her mommy too) And, I will just say bless your heart cause you know how well I would deal with what you do. You are superwoman!

Michael and Hannah said...

Oh Lindsey, you are so very much in my prayers. I can't imagine how difficult it must be to see your child so uncomfortable so much of the time. You handle it all with so much grace... I admit it's easy for us to forget there's anything wrong at all. Thank you for sharing about this and for letting us know how to be praying for your more specifically. Love you!

Marie said...

Lindsey, you and LA have been in my prayers. I can't imagine, but know that God is holding you and Chad as you search and simply live. I pray that answers will be found and that H places people in your path to lift you up and offer love and grace.