I hoped it would be possible to learn why N had autism. It did not run in the family. We have no history of developmental disability. Heart disease and cancer – yes! But the only brain issue in our family history is Parkinson’s disease! Yes, some mental health issues in the family, but no intellectual problems. So how did N develop autism? I wanted to know because perhaps it would help us, help him. So I wondered, did N become autistic because he had brain damage, from when he was ill as a baby? Could autism be just a presentation of early brain damage? Also N was getting seizures. Absence seizures. Why? Are seizures a sign of brain damage? Were seizures, as opposed to his early illness, responsible for the failure to progress? Or was it my fault? Did I eat something, breathe something, come into contact with something, while I was pregnant with N, that caused his autism?
Could medical science help us? Surely we could determine if he had brain damage! Perhaps if we could control the seizures he might be able to make progress.
There was a variety of technology out there for imaging of the brain. So we went on the wait lists. First for an EEG. Then for a MRI.
THE EEG (EachExperience God-awful)
– The we arrived at the hospital early in the morning. The technician started attaching electrodes to his head with some white goo. It was not long before N started removing them. A few iterations of on and off, then it was decided that perhaps N needed a little sedative. I was thinking more along the lines of a big sedative! A nurse came in with some kind of liquid. He swallowed it, however within a very short time we had another problem on our hands! An intoxicated and developmentally delayed child! The sensation of drunkenness that he experienced from the sedative was obviously both intriguing and amusing for him. But it did not slow him down, oh NO. HE wanted to experience the full effect of this new state of inebriation. He tried to walk, and thought it was funny when he staggered into the wall. He was determined to try to move about, to be out of control, and fought our every effort to still him. We had to hold him down, my husband and I, and at some point he hit the wall. Once passed out, the technicians were successful in wiring his head and doing their imaging. Outcome: two exhausted parents, a number of stressed medical professionals, one intoxicated tazmanian devil, no seizures.
I read on the internet that sometimes sedative medication can suppress seizures. So I asked the neurologist if we could try again. So we subjected him and ourselves to a terrible strain. In order to get N to fall asleep, we had to keep him up, ALL NIGHT. I was surprised how easy that was, for him. I, on the other hand, was struggling to stay awake watching John Wayne old western re-runs in the dead of night. We fretted about keeping him awake during the car ride to the hospital. Car rides had always provided perfect sleeping conditions for him ever since he was an infant. He did not sleep in the car. While he nodded from time to time, it was as though he could sense something was up. Perhaps he could sense my anxiety. Once at the hospital, N was WIDE AWAKE. I felt a terrible selfish dismay – we have watched John Wayne all night, for nothing. As we arrived at the neurology department, my ennui intensified – I could see the change in his demeanor, he either recognized where he was and was able to remember the last time, or he maybe just knew he was in a bad place of some kind.
Another fail? At first cooperation with this EEG did not appear likely to happen. However I had a strategy this time. The technician left N and I in the room where the EEG would take place, turned down the lights, and N and I lay down on the hospital bed. Miraculously, wonderously, thankfully, N fell asleep beside me on the bed. While he was almost asleep, the technician quietly came in, attached the electrodes, and did the test. Outcome: tired mom, tired tazmanian devil, SEIZURES! These seizures took place as he was falling asleep. I knew he was having them, I had seen them, I had no proof. THANK GOD! I now had some corroborating evidence. This world is all about fact; intuition just won’t cut it.
We went on anti seizure meds. Like everything with Nick, his reaction to the meds defied expectations. We tried several varieties, and when we found ones that seemed to work, and increased the dose, his seizures seemed to get WORSE. How could anti-seizure meds make seizures WORSE?? Given the impact they were having, we weaned him off the anti seizure meds. It might have been a coincidences we went off the meds, the seizures appeared to lessen.
You are probably thinking – NO THEY ARE NOT THAT DETERMINED, THEY ARE NOT THAT STUPID? Oh, but we were. Yes we tried a third EEG. Maybe some day we will try a fourth. But only if there could be an interest in understanding the connection between autism and seizures.
N had been off the anti-seizure meds for 6 months. And I saw things I did not like. Some things I admit were behavioural, but not all things I saw seemed under his control. I was told that N had “brain events” that were not seizures. OK – so what is it exactly about brain events that is not worth investigating? I still had a feeling that N was having brain events – possibly seizures – at night. What made me believe this was – N was unable to sleep alone. As an infant he slept alone. As a toddler, preschooler, school aged boy, and to this very day (2014) he is unable to sleep alone. I have 3 boys, I know the difference between security, and fear. I did my google research and found that there was a special kind of night seizure associated with learning setbacks, and a specific medication for those seizures. I wanted to know if that was what we were seeing, and if the associated medication would help. So I pressed the medical inertia for another test.
Back we went for a second sleep deprived EEG, a third EEG in total. I think N was maybe 7 or 8 years old for this third attempt to find some answers. Same dreary night without sleep that did not bother N but still did bother me, even without John Wayne. Same alert little body at the hospital dragging around weary mom. Same fight or flight response at arriving at the scene of past confusion. Same quiet room lying down with mom, a larger bed than last time. Same sleep. The technicians did their job. They watched N’s brain as he slept, dreamed, woke up. Outcome: disappointed mom, tired taz, no seizures. Outcome – no medical interest, your kid has autism, nothing we can do…. HUH??? Really????
MRI (Mostly Revealing Ignorance)
The wait for MRI in this part of Canada was 2-3 years, at the time of requesting services. I don’t know what it is today (2014). I actually went to the trouble of having him waitlisted at 2 Ontario hospitals, with 2 paediatric neurology doctors, because I was convinced that the MRI would show something. When we finally got an appointment with Sick Kids, N was about 6 years old. We had waited almost 3 years. We drove into Toronto, back to the hospital where he spent so much time as a baby.
Just going back there, just driving up University Ave, just entering the parking garage with its all too familiar sounds and lights – some scary old ghosts inside me began to stir! The terrible memories, I found them circling around the underground parking lot looking for a spot, I smelled them in the atrium, I heard them whispering within the spray of the fountains, I saw then careening under the dull glow of energy-efficient nautical lights. I was haunted, and strangely afraid.
We waited in the bowels of the hospital for the long anticipated MRI. Hours and hours went by, followed by more hours. We had an appointment, but it seemed that there were other priorities. Patients came and left, while we waited. It was late, end of day, when N was finally called. Last MRI of the day. The nurse went through her checklist. One question slammed the door shut: had N had anything by mouth that day? Just a sip of water at 7:00 am this morning before we left (it was now almost 8 hours later that he had been without food or drink). Sorry we cannot take a chance that he throws up in the MRI machine. MRI cancelled. All day long, we had waited. All day long patients had arrived and been prioritized over us. And we waited, it was not easy to wait with autism, for nothing. Did somebody want to go home? Or was it something more sinister? A darker thought – somebody did not want the MRI to happen? I have never cared about legal liability, I only want to help my son. I cried. Why was there no care in “health care”? Why all this wait, just to be rejected? Was somebody afraid of what the tests might show? I could not help but wonder.
I complained to my family doctor who pulled some strings for N to have an MRI at OTMH. It was less than 1 year after our Hospital for Sick Children debacle. It was a much more pleasant experience in that we were seen right away at the time of the appointment. With somebody with autism, this can make the difference between a successful test and disaster.
N was given a sedative again, and as usual, it did not do what we wanted. N was having no part of that MRI machine. He was not going to lie on that platform and he was not about to be still or cooperate. So I had to go into the MRI with him. Together we lay on the platform for maybe 20 minutes while I comforted him and encouraged him to drop into sleep as the medication took effect. “Go seep, go see-seep!!!” He went to sleep eventually, then the platform, with N and me, slowly entered the MRI chamber.
I felt like a t-shirt in a laundry machine. The noise reminded me of its cycles, first a clean cycle, then a rinse cycle, a spin cycle, and a dry cycle. With gratitude N slept through the entire noisy and claustrophobic experience. As I was lying there inside the machine, maybe about half way through, I suddenly felt something warm and wet flowing down my stomach and sides. UGH! He peeed on me. Both of us emerged from the MRI totally soaked. Nobody threw up, I guess what mattered most to the medical staff did not happen, for which I am grateful. I have a vague memory of walking out of the hospital that day, legs straddling discomfort, looking and smelling like having pissed myself. N walked out, oblivious to his condition and smiling and cheerful and glad to be leaving this strange place.
We did get some information from this misadventure: there was something not right about N’s right temporal region, or so it appeared. The neurologist thought it looked like something that might have happened in-utero, not something from oxygen deprivation, or seizures. I would be happy to take ownership (even though it seemed I was the only one) but a nagging doubt ate away at me. I felt nobody wanted to be part of the problem, or the solution: “We are sorry, it is autism…it is autism…”