A mother knows, a mother always knows.
And as much as I respect and admire our amazing team both here in NWA and LR, there has just been an unsettling feeling that keeps saying something just isn’t right. There are some aspects about medicine that you can’t argue with. An x-ray of a hip that shows 100% dislocation and a femur that bulges from the thigh. Open pressure sores that have broken through the skin with such force that even the lightest touch causes tearing and bleeding that just won’t stop. A child who cannot walk, who cannot talk and whose tiny body sits in a purple wheelchair made just for her. Putting all these things together would explain the presence of pain and why we no longer sleep.
There is a notebook, just a normal spiral one that sits on the kitchen table. There is a time table of feedings and medications that include everything from reflux to spasticity to headaches and the occasional constipation. There is a column for pain that begins with Benadryl, continues with valium and ends with heavy narcotics. Nothing is working from this list. But what I have begun to realize over the last few days is that I don’t think she is in any pain. I know what you are thinking, you have been reading for months now about the extreme pain that we believe she is experiencing so how can it be she really isn’t having any now? But really, I have been really watching her and what I am seeing is just not what I would think of as pain.
72 hours, we have been up for 72 hours again. This is becoming our new pattern. 72 hours up, 24 hours out. No really, 24 straight hours. But her sleep is not one that you and I would experience. It was the first time since I could remember that I thought I had lost her. It was early in the morning, just the glow of a street light and small lamp I have in the kitchen. The sky was still dark and there was a storm in the air. Just that kind of morning that things like this happen. She was in her chair, she had not moved, not one thing was different about her from when I had quietly tiptoed into my room to try to sleep the night before. Her beautiful glow was flat and her lips were as white as snow. I didn’t run to her or grab for the phone …. I just stood and waited for some sign of life. I finally gathered enough nerve to walk over to her and as I put my hand on her chest I waited for some movement, there was nothing. I closed my eyes, waited again and then she moved. It wasn’t dramatic, just a breath in with a little gasp. I was prepared to take her to the doctor but she stirred and woke up and she was Elizabeth. The next 3 nights she actually slept and I was sure we had turned the corner.
This corner we turned led us down a path I want to vere from. Actually, I want off, completely off this damn road all together. I had made the decision that if we found ourselves with no sleep again this morning I would call the pediatrician and firmly plant my feet until I left with some type of sleeping pill, whether it be for her or for me. I believe it has been documented that I rarely take my children to the doctor, including Elizabeth. There have been many times that the nurse will call me and ask about Elizabeth and remind me that I need to check in with them from time to time even if she is not having any problems. So I am guessing that my 4 visits in a months time over sleeping and pain issues deserved a visit with one of our seasoned docs. He was so good to Elizabeth and listened to my every word about pain and sleep and then he does something no one else has done ….
He begins to pull on E … first her legs and then her arms. He pulls her forward and backward. He takes each foot and moves it up and down and then does the same to her hands. Elizabeth never flinches, never cries out in pain and quite honestly smiled more than I have seen in days. He steps back and just stares at E, which made me feel like I needed to fill the silence with everything that every doctor has done for the last 2 months. And then he says …
I don’t think she can feel any pain.
Okay, wait … what?? Because Elizabeth and I have been having all night movie nights and My Big Fat Greek Wedding just happened to be our most recent I suddenly went into full Greek mode and the line …
What do you mean he don’t eat no meat came out of my mouth, only it was what do you mean she don’t feel no pain? I had the thick accent and hand gesture to add that dramatic flair I felt that question needed. Okay … so maybe that was all just played out in my head and instead I stood there with this puzzled look on my face but as he pulled the side her hip that is completely out up over her body she laughed, she seriously laughed. My instinct was right, this child was not feeling the pain we all were sure she was.
I am standing in front of Elizabeth, watching her smile and thinking this is good news, very good news when he turns to me and says the one word, the one diagnosis I didn’t want to add to her list.
No, nope I was not going to claim it. We knew that Elizabeth had a type of seizure disorder but we felt we were the lucky ones because it was considered muscular and not neurological. It is a seizure that happened maybe once a year, twice at best and it was totally livable with and without any complications. He went on to explain to me that right now she was experiencing Subclinical Seizures … one that presents no symptoms, also known as Non-Convulsive Status Epilepticus or NCSE. This type of “absent” seizure can last minutes, hours or even days. The brain just cannot turn itself off and so the neuron sparks are constant until finally the body just says I can’t keep up anymore and shuts down, which would explain our coma like 24 hour sleep. So I asked what about these times that she balls up and screams at me and cries and I can’t get her body to stop? These are clinical seizures, the symptoms are present and more familiar. These are the seizures that only last seconds or minutes.
Scoliosis, a dislocated hip, a foot that turns in … these are the everyday symptoms of CP that I can live with, but the Epilepsy diagnosis has taken me to the ground in a wadded up mess. It’s been with her for years and I never once considered it to be anything but pain and temper tantrums. I just always assumed it was pain because there was something physical that it could be pinpointed back to and then fixed in some fashion. There is nothing worse to a mother than the guilt she bestows upon herself when her children are sick. I have spent the day watching her, studying her every movement and it is textbook, Epilepsy in all its glory. We go from subclinical to clinical and back to subclinical again in a matter of minutes or hours. Even now, at 1:30 in the morning her eyes are closed but not asleep.
She moves in such a way as you and I would if we were tossing and turning in bed. Her body is fighting itself and I am totally helpless, how did I miss this??
No new medications right now, just keep up her regular meds and add Aleve and Benadryl as she can tolerate it. Monday morning we will begin scheduling for the official diagnosis with a series of MRI’s and CT scans to rule out any bleeding on the brain. We will then have the EEG followed by a video EEG. All of this will help us see what is going on in that tiny brain of hers and determine what best anti-seizure meds she will need to calm her very overactive brain down with.
Todays new diagnosis broke me but when I look at Elizabeth I see a hero, my hero and I think this too we will survive …