Friday, August 14, 2015

Cyclic Vomiting? FPIES? Whatever it is, we don't like it.

I’ve briefly mentioned in past posts that our son Greyden has severe vomiting episodes with no known cause. These are sad, stressful, and sometimes scary times for us as parents. We feel hopeless as we watch our little boy struggle through extreme pain and nausea, inconsolable and white as a sheet. As quickly as the episodes begin, they end, and suddenly Grey is back to normal, happy, energetic, and hungry. It’s all so crazy and bizarre.

Greyden experienced his fifth documented episode this past Tuesday. Every time we have another episode, I find myself on a frantic hunt for answers for the next many days. I scour the internet and forums, try to talk to anyone I can who I think might have some small bit of advise on how to protect our son. I just want to help my little boy, to stop these horrible episodes. The pediatric GI says Greyden has cyclic vomiting syndrome, which is a disease that is not clearly understood, but it's believed that basically the brain misfires and sends your digestive tract into a seizure or migraine of sorts. Our allergist has concerns that it may be an FPIES reaction, which is a severe reaction to ingested food proteins. The naturopath leans more toward a food reaction, also. After doing my own reading and research, I lean more toward it being cyclic vomiting syndrome. Clearly, there's no straight answer.

The episode this past Tuesday morning started like every other episode Greyden has had.  They're incredibly predictable.  I had checked on him in his room as I'd headed downstairs in the early morning, and saw him curled up in a ball on his bed. Maybe that should have been my first sign, since he typically lays spread out while he's sleeping.  Shortly after, around 7 am, I heard his distressed wails at the top of the stairs.  “Mommy it hurts!! It hurts!!” I ran upstairs to find him holding his abdomen, crying.  I scooped him into my arms, ran into the bathroom, and flipped on the light to check his lips. Sure enough, they were losing their color. That is always our sign; his lips turn white. I took Greyden quickly into our bedroom where Dave was still sleeping, and tried to wake him as gently as possible, saying, “Dave, I think he’s having another episode.” Dave immediately climbed out of bed and we started our regimen.

We gathered a bucket and towels, went downstairs, and I held Greyden and tried to comfort him. We got him a cup of water, which he always requests. He was completely washed out at this point and kept moving in my arms, unable to get comfortable, whimpering and putting his hand over his abdomen and crying, “It hurts!!” After a short while, the pain seemed to get worse, and Greyden pointed to his stomach and said, “I can’t move!” Dave took him and held him at that point, and then suddenly Greyden started shaking. I’d never seen him do this before, and panic rushed through me. Dave and I quickly discussed if we might need to take him for medical help, and so I ran upstairs to put on enough clothes to head out the door. As I went past the playroom, I quickly glanced at Krew, who was happily playing with his Legos on the floor and was completely unaware of anything happening. I wondered if I should get him dressed or call someone quickly to come stay with him. I did neither. I ran back downstairs, where Greyden was still having shaking episodes. Then, praise the Lord, the shaking stopped. Greyden’s body relaxed, and I watched as his eyes rolled a bit and his eyelids closed. I’d seen this before with past episodes and knew that he was ok. He often did this. I watched his chest against Dave’s to make sure it was moving, watched the rhythm of his breath. I never know if he’s truly sleeping during these moments or if the pain is so severe that he is basically passing out.

Dave took Greyden out on the back porch and sat with him, I assume both for the fresh air and to prepare for the vomit we knew was likely coming. As we sat outside, I took this video for documentation (don’t worry, there's no vomit).

As you can see, all the blood had drained from his body. He was white as a ghost, but had a summer tan so instead he just looked orange all over. You can’t tell where his lips meet his face because it’s all the same color.

We sat outside for quite a while, just waiting. When we felt fairly certain that the worst was over and we weren’t going to need medical help, I quickly got Krew dressed and took him to our sitter’s house, where they were already expecting him for the day, although not for another hour and a half. I couldn’t help but start crying as I explained to Eileen why Krew was there earlier than normal, and why Greyden wasn’t with him. Fortunately, Eileen knows this scenario well by now too, and gave me a big hug and didn’t ask many questions.

When I got back home, Greyden was still lethargic and washed out, but had not yet vomited. He was asking for water, as he always does during his episodes. The water usually causes him to vomit, but it actually seems better that way because for a short while after vomiting he seems to be in less distress. So we gave him all the water he wanted. Sure enough, within 15 or 20 minutes he had his first major vomit. It was almost all water, as we expected. We wiped him and everything else in his proximity down with towels and changed him into clean underwear, then we covered the couch in towels and laid him down with a sippy cup of water and the iPad. A little bit of color had come back to his face and he was able to talk to us a little. He drank water and quietly watched the iPad when he was able to find a comfortable position. Twenty minutes later, all his color washed away again and he began requesting that we would hold him. We knew another round of vomiting was coming. Before long, there it was. This time we managed to get some of it into the bucket.

During one of his calm times, when the pain subsided enough for him to rest by himself.

We followed this pattern until 10am.  Intense pain and nausea, vomit, a little respite with some color returning to his face, water, pain and nausea comes back, he turns white, he vomits again.  With past episodes, the cycle has lasted until 11am or noon. This time, although it seemed to start out more severe than normal, it ended more quickly than we expected.  At 10 am he vomited one last time, and afterward requested some juice and apples. When he starts asking for non-water beverages and food, we always know that his episode is passing. His color continued to come back at this point, and before long he fell asleep sitting up on the couch, wrapped in a towel. He’d only had one sip of his juice and hadn’t touched his apples, but I felt confident that the episode was over. Dave felt confident about it too and decided to shower and head into the office for work.

(Yes, there's a mattress in our living room. The boys use it as a trampoline.)

I worked from the kitchen table until Greyden awoke an hour and a half later. As I expected, he acted as if nothing had ever been wrong. He bounced up from the couch, full of energy and color. He started chatting my ear off, requested food, and begged for me to let him help make his plate. Our little boy was back. I fed him, dressed him, and took him to the sitter’s for the rest of the day. She reported later that he was perfectly normal and energetic the whole afternoon.

Helping me with the mail right after he woke up.

Cutest weirdest face I've ever seen him make. Also right after waking up.

I share this story for several reasons. First, there’s always the chance that someone out there will read this and be able to offer us some bit of advice. We are searching for answers and so desperately want to know how to help and protect our little boy. Whether it's cyclic vomiting syndrome or FPIES, both of them have triggers.  If we could figure out these triggers, maybe we could avoid some of these episodes.  Second, it is good for my own documentation. The more details we can remember for solving this mystery, the better. Third, I think our family and friends want to understand what we mean when we say, “Greyden is having a vomiting episode.” They want to know how to support us and pray for us. And we cherish all support and prayers. This disease or food reaction or whatever it is is downright horrible. And it breaks my heart to know that there are kids out there who go through this far more often than Greyden. He only has episodes every two to six months. Other kids or adults with cylic vomiting or FPIES have them every month or every week. They can last for entire 24 hours periods or longer, and sometimes the kids or adults can end up in the hospital from complications.  It can be devastating.

For now, our little boy is through his latest episode and is back to his happy, bouncy self.  In a week or so, the intensity of this past Tuesday will fade from my thoughts, and for a while I'll rarely think about his episodes.  I usually forget to even wonder when the next one will occur.  But, as is always the case, the next one will inevitably come.  And then we'll just start all over.  But with every episode he has, we are able to collect a little more information, a few more clues.  So maybe, hopefully, eventually we'll figure this thing out.

Same kid, same day, just hours apart.

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