Tag Archives: celiac disease

Friday… Well, Not so Fun, But Answers Bring Relief…and Irrational Guilt… and Somehow the Muppets Fit Into It

sleep study blog*Deep breaths* So it’s only an Arnold-Chiari Type 1 malformation. It’s not a type 2 or 3, fortunately. But it means Charlie probably needs neurosurgery.

Neuro. Surgery.

Wow. The kid is only four.

I’m so glad I’m an observant mother. I noticed that just as Charlie fell asleep, he would exhale…then wait. After several moments, he would gasp in his air. The first time I brought it up to our pediatrician, he said, “As long as he’s not snoring, he should be fine.”

Um… oookay! Time for a second opinion.

Same pediatric group, but a different doctor, checked his tonsils and adenoids, and they were fine, so she sent us to a sleep specialist. *sigh* Good, getting somewhere.

A sleep study determined Central Sleep Apnea, but they didn’t know the cause. MRI time.

That’s what revealed the Chiari Malformation and where we are now.

So I’m reading up and according to National Institute of Neurological Disorders and Stroke,  “It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet.”

That actually makes a lot of sense. During my entire pregnancy with Charlie I was lactose intolerant. After he was born, I discovered my issues with gluten leading to self-diagnosis (long story about a lazy GI “specialist”) of celiac disease which would explain the weird lactose intolerance which seemed to disappear a few months after Charlie was born. I’d had a random bout of lactose intolerance before that vanished just as weirdly. I can’t remember if I brought up the lactose intolerance to my obstetrician. I’m pretty sure I did, but I’m going to contact them to find out.

Celiac disease is known for malabsorption of nutrients because it blunts the villi in the intestine where they are absorbed. I had no idea that I might have celiac disease when I was pregnant with either one of my boys.

*slumps shoulders* Bring on irrational guilt.

I know, it’s not my fault. It’s not like I drank alcohol or smoked. I took care of my body with the knowledge I had at the time. As rigorous as I am to sticking to a gluten-free diet, had I known then what I know now, part of me thinks that Charlie wouldn’t have this problem at all.

Oh, if time travel were truly possible! Circumstances like these are probably why we creative types dream of it. When I think of all the expensive prenatal vitamins that I took but probably did not absorb because I was also eating bread, I start to feel quite sick.

Ugh.

Well, at least we know what’s going on now, instead of when he’s a high school dropout at 16 because we couldn’t figure out why he couldn’t focus or even why he didn’t have the fine motor skills to write his name properly.

There’s definitely that.

Meanwhile, for the last day and a half since the first mention of the word “neurosurgery,” a kink in my own mental wiring thrust this blast from the past that I never have forgotten:

When Baby Piggy promises to practice neurosurgery on Kermie’s brain… yeah. It’s been stuck in my head ever since. I guess it’s my subconscious way of lightening my mood. 😉

Simply prayers, please.

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Hmm…Frigid, Churning River, or Gluten? I’ll Take the River!

That’s obviously not me. But I’m pretty sure that’s the falls that ate my sunglasses. Image attributed to anoldent via Wikimedia Commons.

First off: The Stone of Kings will be released August 12! Squee! That means I’m going to officially show off its gorgeous cover tomorrow. I don’t usually post on Tuesdays, but this is a special occasion. 😉

Why Writers Don’t Fear Death

This past week, we’ve been on vacation in Helen, Georgia. If you ever get the chance to go, I highly recommend it. It’s a cute, touristy town in the Northern part of the state and it’s modeled to look like a Swiss village. On Wednesday, we took a day trip to go rafting down the Nantahala River in North Carolina.

The river flows from a dam. The water is pumped from the lowest part of the lake which is always around 40 degrees. After blending with the rain water and regular river water, it runs about 50 degrees.

When we started out, the double paddle I was given kept dripping the frigid water on my legs. I paddled on my inflatable kayak (funyak) with my husband and his cousin in their funyaks. The first time we hit a rough rapid, the water splashed on my face and body and made the drips coming from my paddle inconsequential. We floated down, occasionally getting splashed for about 2 hours. One splashing dribbled through the back of my life vest and it felt like someone had dropped an ice-cube down the back of my swimsuit.

Then we hit the last rapid.

It’s the only class III on the commercial part of the river. Not too rough if you’re in a large raft with lots of other rowers. But by yourself, it’s a different story. I had gone on this one before in a funyak, so I figured I knew what I was doing.

My husband went first, and made it through okay. Then it was my turn. The white water was pumping through the stones and I hit it with my left side showing. I think that was where I went wrong. The current took my boat and flipped me over. I gripped my paddle as hard as I could just for something to grip. I was completely disoriented.

My brain didn’t register the cold until my face broke the surface. I tried to breathe because I knew that the current would pull me back in again, but my lungs wouldn’t expand because they were frozen by the water. I gasped in short panicked bursts. This felt weird, because I wasn’t panicked.

What would be the first thing to go through your mind? What if the current bashes my head on a rock? What if my foot gets stuck in some stones and the current makes my legs or knees break? What if my back hits a stone and breaks it, paralyzing me?

Pffft.

The first thing that ran through my mind was, this would make a great description for a story!

The writer’s mind apparently puts the story first. We can’t even take a vacation without thinking about plot points.

Then I heard, “Rope!”

A man on the river bank threw out a rope and pulled me out of the current. When I tried to stand, I realized I needed to take it slow. I was still dizzy from being tossed around like my four-year-old’s stuffed Mickey Mouse. When I tried to walk, it felt like my feet had turned into blocks of ice. The muscles in them refused to work but the ones in my arms were going spastic with shivers.

Then I realized that my third pair of sunglasses this trip, were missing. Charlie had snapped the first pair, William stepped on the second, and now the river had claimed the third. At least, I noticed that my hubby had managed to grab hold of my funyak before getting out of the river himself. His cousin made it through the falls just fine too.

Face to Face With Gluten! *Shivers*

Two nights later, we all went out to dinner, I ordered gluten-free rotini pasta. Like the river, I’d been here before, not had any trouble with the food, so I felt pretty confident about what I was eating.

Then I saw the shell.

About halfway through my meal, I spotted regular, wheat, pasta shell lurking among my gluten-free rotini. Remember the splash of river water that felt like an ice-cube was sliding down my back? Somehow the river found its way to the restaurant because I felt it again.

Sure enough, though I obviously didn’t eat the shell, it was enough to contaminate my dinner. Two hours later I was squirming with abdominal cramps and nausea. Ugh. At least it happened on the last night of our vacation.

It’s going to be a loooong seven weeks.

Given the choice between falling in 50 degree water or eating gluten…I pick the water!

I’d love to hear from you!

What are some of your adventures? Would you do them again? If faced with potential life-threatening danger, would your life flash before your eyes, or would you want to put the experience in a book?

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Filed under Gluten, Writing