June 11, 2014

The things we can't see

SB was sitting at the kitchen table, having an after school snack. I have found it is vital to the mutual enjoyment (and survival) of the remainder of the day that she eat something as soon as she gets home. She never protests.

I let her watch some PBS and simply unwind. After being, "on" all day, she needs some down time.

I was in the laundry room folding clothes. Suddenly, she began to scream.

"Ow! Stop it! You're hurting me!"

I ran into the kitchen.

"Honey, what is wrong?"

"It's attacking me!" she screamed, hysterical.

"What is attacking you?"

"The TABLE!"

She sounded exasperated that I did not realize what was happening.

"Sweetheart," I reasoned, "Tables cannot attack you. They are inanimate objects. They aren't alive, and they can't move on their own."

She pushed back violently from the table, nearly toppling her chair over.

"OW!" she screamed again. Then she pointed to the space under the table. "Can't you see? Can't you see the legs kicking me? It hurts me!"

I was confused. Concerned. At a complete loss as to what to do. But one thing was clear to me - in her mind this was very real. This was happening. 

"OK, let's get you away from the table," I told her, picking her up and carrying her into the living room. I placed her on the couch.

"I'm going to go get your blanket," I said. "I'll be right back. You're safe now."

"Thank you, Mommy." Her voice was soft, fragile.

When I returned and wrapped her in her favorite blanket, she was calm. She complained she felt a tingling in her legs and feet. I wondered if I needed to dial 911 or drive her to the emergency room myself.

Otherwise, she seemed completely fine.

I tried to think about what exactly had taken place, and more importantly, why. 

She had not been out in the heat. She had just had a snack and a beverage. Could she be running a fever? I got the thermometer and took her temperature. Normal.

That pretty much ruled out all the obvious potential causes I could come up with. Sitting beside her on the couch and turning on the TV to keep her occupied, I Googled "seizures and hallucinations" on my phone.

A number of links came up. As I read them, it seemed the type of seizures she has (simple and complex partial) and where they originate (the left temporal lobe) could potentially cause an event like what I had just witnessed.

I dialed her neurologist's office, and relayed all the details to a nurse. She agreed it was a hallucination, and said she would talk to SB's neurologist and get back to me. It was close to the end of the day, so she apologetically explained it could be the following morning before she could get back to me.

The next day, the nurse reported the neurologist did not feel the hallucination was related to SB's epilepsy. If it happened again, they would want to do another EEG. But otherwise, they had no insight or direction to offer.

I was not satisfied with that. It did not in any way seem normal to me that SB would experience a hallucination. Could there be any other physical causes? 

Another Google search revealed that low sodium levels can cause hallucinations. Low sodium is a risk factor of the anti-seizure medication SB takes daily. Why this did not occur to her neurologist, I'm not sure. But I decided to call her regular pediatrician.

He agreed with me the event definitely warranted further investigation. He felt it would be much easier for us to get in to his office on short notice than to schedule an appointment with her neurologist. He wanted me to bring SB in for a full physical and blood work. He was going to be out of the office for a few days, but we set up an appointment with a different doctor in the practice. One we have seen before and know well.

SB sailed through the physical. The doctor listened to my description of the event and asked a number of specific questions. She agreed with me that it had not been hypoglycemia, heat exhaustion, dehydration, or illness. So what was it?

I mentioned how twice in the past week, SB had specifically asked to eat salt. By itself. The first time she has ever showed any interest in it. A sign her body was craving something it is missing?

"That is exactly how it works," the doctor said, nodding. "The body knows what it needs."

She said she was concerned SB's electrolytes could be out of balance, a potential side effect of her medication, and something that could definitely cause the kind of thing that happened that day. She also wanted to measure the amount of anti-seizure medication in her blood. Sometimes, she explained, the body does not absorb it well, and it can build up in the bloodstream. Also causing similar issues.

If either turned out to be the case, SB's dosage would need to be altered. Her neurologist has not changed it for some time, since she has only had one breakthrough seizure in the last year, and that was when she was sick and running a fever.

It took hubby and me both to hold SB down for the blood draw. He was on vacation and I insisted he come along, remembering how difficult the last one had been. The anticipation was the worst part. Once the needle was in, SB calmed down and stopped fighting.

Now we wait. It could be that everything is normal and what happened was simply a freak event. My gut tells me something is going to show up in the lab work. And my Mommy gut has never been wrong before.

In the meantime, SB seems to be doing OK. A little more tired and grumpy than usual, but otherwise functioning just fine. She is attending Vacation Bible School this week, which she loves. It is something she looks forward to all year long.

VBS is only half day, and the rest of the time we are taking things easy. Next week she is scheduled to attend camp at our local zoo, all day each day. That is something she has been waiting years to be old enough to attend. She is very excited, and I hope she will be able to go.

Oh, and in case I haven't mentioned it, SB graduated from VPK last week and is officially a Kindergartener!

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