Epilepsy, Hospitals and Waiting Games
According to Autism Speaks, as many as 1/3 of individuals with autism also have epilepsy. Epilepsy is a neurological disorder, characterized by sudden and brief changes in the brain. You can read more on epilepsy here.
For the last several months we have been tracking “episodes” with MJ. These episodes were usually brought on by something that made her extremely anxious (crowds, parties, massive changes in routine) and involved varying degrees of symptoms, often blocking out the offending episode from her memory, inability to focus for an extended period of time afterwards, exhaustion (sleep without melatonin) and deep purple circles under her eyes.
At first it was thought that these episodes were anxiety based since her anxiety levels were off the chart when she was diagnosed with Aspergers. We focused on teaching her coping skills, increasing social stories and trying to limit anxiety-based situations – which meant limiting our extracurricular activities while we got things under control. However, that really didn’t happen.
In recent weeks, they began to come more frequently and involved slight hand tremors and bluish rings around her mouth.
The first time she blocked out over an hour of her day I was never more scared in my life. I’m not sure it gets easier when it happens, we had another episode today where after a bad fall and post-fall meltdown she couldn’t remember actually falling (and there were instant bruises to prove it) and every time it happens my heart feels like it is jumping out of my chest.
There now was enough evidence for our pediatrician to order an EEG. Leading up to the test, we prepped her for the test. She had a tour of the hospital – where the Child Life Specialist and Charge Nurse of pediatrics took her through the test with a video and even went through a practice test on a puppet. I took pictures and wrote a social story.
The episodes continued while this was happening – and included a new symptom. One day when we were playing, she stopped what she was doing and said “Mommy, I see rainbows when I close my eyes.” When I asked her what she meant by that, she said “I see rainbows on the inside of my eyelids, like swirling leaves, blue, purple, yellow and red.” She then zoned out and wanted to lie down.
The doctor changed our test to an overnight study – I quickly changed our story, and we spent three days focused on prep; we practiced braiding her hair (something they said they would do), because she has a hard time brushing her hair and having her head touched in general. We spent days giving each other practice EEGs – we made a list of all the things she needed to take to the hospital. She was anxious, but ready for her sleepover.
We got to the hospital. We registered. We went upstairs and heard they weren’t ready for us yet, but that we could play in the playroom. That was ok – we’d prepped for that.. However we hadn’t prepped for needing to wait for hours. We didn’t prep for the lack of communication and the fact that the hospital staff didn’t know her EEG had been changed to an overnight one.
Four hours in, she was finally in her room. We had lunch (which thankfully we brought, because unfortunately the hospital food staff do not understand dairy and soy allergies very well). That of course was different, we’d prepped for lunch after the test.. Then the technician came up and things continued to go downhill.
She sloughed off the braids (which in hindsight, I should have pushed because washing that stuff out of her tangled the hair the next day was hell – and not just because it was messy).
We had prepped MJ for the fact that although she’d be hooked up, she’d get to wear a helmet (another thing we had to practice) but be able to move around and go to the playroom… Another change of plans, the pediatrician had also decided to order a video monitored EEG – that meant no helmet and no portable machine. MJ had to stay in her room and was only allowed to leave her bed to go to the bathroom until the next day. While she was happy to not have a helmet, this was a major change in plans and it upset her more than wearing the helmet would have. They instead wrapped her head in gauze including under her chin to keep it in place..
Oh Oh – we didn’t prep her for that.. I know her well, I could see her anxiety levels rising. I tried to talk to the technician, the nurse, but they don’t know my child, they only saw a girl who was masking her anxiety and behaviours. If I heard one more comment “but she doesn’t look like she has autism” I was going to scream.
When everyone had left and it was just us, MJ with tears in her eyes started telling us it hurt (we think it was pulling on her hair possibly), and that she didn’t like it and wanted to go home. She started telling me she was nauseous. I tried diverting her attention but she wasn’t interested in anything, she was anxious and upset. She was very withdrawn. We put on a movie.
She looked at me all of the sudden and said “mommy, that green liquid that is supposed to be in my stomach is now in my throat” I think I mentioned in my potty-training post how MJ knows how her body works – she was referring to the stomach bile and her acid reflux.
Before I had much of a chance to do anything but go to her, she tossed her cookies – everywhere – and not just a little bit. She felt so anxious that she was sick to her stomach.
The rest of the afternoon and evening she was withdrawn, no desire to play with toys we offered to bring from the playroom, games or any sensory items we brought in. Frequent bursts of tears and cries for home, but no more vomit. She slept some because she had been sleep-deprived, but even with melatonin she couldn’t fall asleep and I couldn’t prep her for all the noises or the crying baby next door. I tried to bring her favourite blanket (but she threw up on it) and other comforts, but all she could do was say “it’s not home.”
After a rough night for both of us, the next morning brought more anxiousness. When can it come off? Asking every person who came in her room if they could take the electrodes off her head and eyes filling with tears when they said they couldn’t. We were told that we would be able to go home between 8:30 and 10 am. I set a visual timer and tried to distract her again. Then the unthinkable happened.
A nurse walked in at 9:15 and said “Oh no, you’re not leaving until 2 p.m. because they hooked her up so late.. ” I looked immediately to MJ and saw her eyes grow wide as saucers (which if you know my daughter know that’s pretty wide she already has about the biggest blue eyes on the planet) and fill with tears. I watched her start to fidget and get anxious. I knew I had to diffuse the situation. I walked the nurse out into the hall and explained my daughter had been prepped for one thing and that no one had told us any different. Throwing a surprise like this on her after all the other surprises and a stressful 24 hours was not acceptable – especially not without talking to her parents first.
Turns out there was another miscommunication, the nurses thought 24 hours meant 24 hours when in reality all they meant was an overnight stay.
20 minutes later the EEG technician came in started removing the electrodes. MJ was one happy little girl. Until they started trying to take the goop out of her hair which had now gotten hard and sticky and was tangled in her hair since it wasn’t in nice neat little braids. The technician left it when she saw MJ getting tense and I did the best job I could until later.
After the entire ordeal, miss MJ decided she wanted to go to daycare (she’s in a small home-based daycare) and have her Autism Support Worker come for therapy that afternoon. I think in all honesty she just wanted some normalcy back. Her familiar routine. So we followed her lead.
That night when I was giving her a bath, we had some pretty major regressions around head touching and hair washing, and have had a weekend full of tears and meltdowns – but we also had a milestone. Friday night as she burst at the seams – she stopped herself in mid strike towards me and instead curled herself into a ball and sobbed. That autism parents you will see as a milestone I’m sure. MJ used to bite me when she got upset, we progressed to just hitting and pushing, which although she’s only four, let me tell you she can still pack a punch. Despite everything that she had been through, the fact that she recognized her emotions enough to stop in mid punch is huge and I am so proud of her for that and for trying to be so brave and handle all of the changes that were thrown at her.
Now we wait, we wait for hundreds of pages of EEG sheets with spikes and events to be read and a report to be written. We have a good two weeks to sit and wait. That’s a long time to find out if she is having seizures and if so – where? what kind? what is treatment? I feel like I have a handle on her autism (or at least somewhat). I know what triggers her meltdowns – I know what I can do to help (or at least try).
This however is a whole new world of unknown and it scares the hell out of me. However, there’s not much I can do right now (must resist urge to Google everything), so I had to find a way to look at it differently. And it was as I was trying to find a different perspective on the last few days, that I realized this has been a really good opportunity for me to take a look inside my daughter’s brain.
I wonder is this fear I have of the unknown, what she feels like every time she doesn’t know what is about to happen in any circumstance. If so, I can understand the panic, the anxiety and the general fear and feel awful that this is what she might be feeling on a regular basis. I don’t think like my daughter, I’m neuro-typical as they say, but sometimes in moments like these, I can get a glimpse into what life might be like for her and use it to try and find ways to help her.