Liam’s appointment for his EEG was scheduled for 19 January 2017, I had explained the process to him the day before and told him that he would need to sit as still as possible. I was a little worried that he wouldn’t be able to with his motor tics, but figured that the technician would know how to deal with that.
When we were called in, Liam was asked to lie down on the bed and to be as still as possible while the technician popped the electrodes onto his head. Liam ticced once during the process and the technician asked me what that was, so I explained Liam’s motor and vocal tics to her. She nodded and continued popping the electrodes onto his head. Liam fell asleep before she was done placing the electrodes and I asked her if it would be a problem with him asleep, she said it was fine and began the test.
She asked me a series of questions about Liam, like whether he usually falls asleep so easily, when did the tics start, what medication he was on etc.
After a little while she asked me to wake Liam up gently so that he didn’t move too much when he awoke. I went to the bed and called his name and gently shook his shoulder until his eyes started to open and asked him not to move, but to stay awake. His eyes were so heavy he could barely keep them open.
The technician asked him to breathe in and out deeply, which he did, but it looked to me like he was dozing off between breaths. She then asked him to focus on something in the room without moving his head and to stare at the object. After that she asked him to keep his eyes closed and placed a light in front of his face and then the light began to flash. Once that was all done, she started taking the electrodes off his head and we were done. The test ran for about 30 minutes from the time the electrodes were on his head until she took them off his head, and he was asleep for about 20 minutes of the test.
As mentioned in my previous blog post ‘What Makes You Tic – Liam’s Story‘, Liam caught a bit of a cold the next day, and I started giving him cold meds to clear it up. He only wanted to eat raw fruits and vegetables and he did a pH test for fun which showed his alkaline levels were quite high. We didn’t notice him tic between 21 and 25 January.
On 25 January our family Doctor told me that he really needed to see me about Liam’s EEG results and I made an appointment to see him on the afternoon of 26 January.
Once again, I thought that maybe now we would get a diagnosis of ADD, ADHD or Autism, but he told me that Liam has epilepsy. I was shocked! Epilepsy had never crossed our minds, and so I didn’t have any questions prepared for him.
He explained that Liam would ‘shut down’ for 2-5 seconds at a time, multiple times during the day and that it was a very difficult thing to spot, but it would explain why he had trouble following instructions and concentrating. He said that Liam should never have been put on Ritalin and he should never be given any stimulant medication, as that would increase his episodes. He told me that it’s not the convulsing kind of epilepsy and that many people immediately think of that, and what they see in the movies, when they hear the word ‘epilepsy’. Liam will simply start doing something, he would ‘shut down’ for between 2-5 seconds, and then continue what he was doing. In fact, the most dangerous part of this kind of epilepsy would be if he were swimming, and knowing how much Liam loved to swim, said he was quite relieved that nothing terrible had happened in the pool. Liam would need to go onto anticonvulsant medication and he would more than likely grow out of it by his 18th birthday.
He didn’t call it CAE, or Childhood Absence Epilepsy, but as a mommy does, when I got home I consulted the great oracle Google and read as much as I could with the symptoms our Doctor had described to me. With those symptoms in mind, I read that it was called CAE.
With the new found fear I had of medications, I read the package insert for Navalpro CR200 which was prescribed. I read that it could cause liver damage, suicidal thoughts and a variety of other side-effects, and that the drug was also given to Bipolar patients. Our Doctor had handed me a blood test form before leaving his rooms to test Liam’s liver after 2 months of being on the new meds, urgh!
Nevertheless, I gave Liam the meds as directed, but wasn’t entirely happy about it. I was very worried that the meds would cause other problems.
About a week later, I popped into our Doctors rooms to collect the chronic medication form he had filled in. Attached to the form was the Neurologists brief letter to our Doctor with his findings. In the letter he noted that the EEG was ‘an awake EEG’. This concerned me, as Liam was asleep for most of the test, and I wondered if he was aware of that fact, and if not, if the results would be different if he knew Liam was asleep.
I had also had time to do some research on CAE and so when I went in to collect the form, I also dropped off a list of questions I had for our Doctor. In one of the questions I mentioned that Liam was asleep for most of the test. It has been over 2 months now since dropping off the questions and I have still not had any answers. Our Doctor has emailed me to say that he has been having difficulty getting in touch with the Neurologist, and that Liam’s file is on his desk and will remain there until he can get the answers to my questions.
In the meantime, I am still convinced there is a nutrition connection to all of the issues that have been popping up over the years, and I have been pursuing that idea.