And so it all started two days after Evan was discharged from the hospital back in May. He had his EEG done on Monday, April 30 and was promptly discharged on the Wednesday because there were no abnormalities on his EEG results. On Friday, May 4 at home I started noticing some very subtle body twitches that happened in clusters. By the next day Evan’s eyeballs started to flick-up with the twitches and these happened throughout the day. Joseph and I visited Dr. Google and found some disturbing articles about Infantile Spasms so we decided to record of few of these episodes (http://www.youtube.com/watch?v=dXRN2Uz8KY4) and ended up sending them to the pediatrician, Dr. Wilson by the following Wednesday.

The doctor didn’t get around to looking at them until Saturday, May 12 but then phoned us to tell us not to worry because Evan’s previous EEG was normal and he didn’t show any other signs of infantile spasm. The doctor was pretty sure it was only Benign myoclonus of early infancy or benign non-epileptic infantile spasms (something that did no harm and would eventually go away on its own) but asked us to keep an eye on his symptoms in case anything changed.

I was a bit nervous about this conclusion because the twitches didn’t *technically* start until four days AFTER the EEG so *technically* Evan could have been perfectly fine on Monday but could have developed something by Friday. However, I wasn’t the specialist and so we just let it go.

On Thursday, June 14 Evan had his regular check-up with Dr. Wilson at Grand River Hospital. We informed the doctor that Evan’s twitches were still present, got a bit stronger and started to annoy him a bit (previously he didn’t seem to notice them as you could see in the video link above). He also started to do a head-drop with the twitches. Dr. Wilson ended up ordering another EEG for Evan as precaution just because it would really suck to have accidentally missed something like Infantile Spasm.

We were told that scheduling an EEG would take 4-6 weeks but on Monday, June 18 I got a call from the hospital asking me if I could come in with Evan by noon. I was like, “hey, the sooner the better!” Dr. Wilson told us that if the EEG results had issues, he would definitely be in touch. So the motto of the week was, “no news is good news!”

At the end of the day though, I’m so glad Evan got the new EEG even if it was bad news; because otherwise we would have still assumed it was Benign myoclonus of early infancy.

On Friday, June 22 after Infant Development from the Region of Waterloo’s Public Health Department had visited Evan for his monthly assessment, we got a call from Dr. Wilson. I was hoping that I wouldn’t get a call… :p But such is life and I did get a call and was told that the results came back with abnormal activity. The abnormality was not typical of infantile spasms though but it definitely wasn’t normal either.

As such, we were referred to a pediatric neurologist, Dr. Mesterman, at McMaster Children’s Hospital. Dr. Mesterman wanted an EEG done at McMaster as a basepoint so we went for another EEG on Monday, June 25. The EEG results were the same: not enough to conclude infantile spasms but his physical reactions (eye rolling, arms & legs jerking, and head-dropping) were alarming enough that the pediatric neurologist didn’t feel comfortable sending him home unless she could get a 6 hr video EEG within the week.

Unfortunately, as an out-patient, the earliest 6 hr EEG had to wait until July 19. This wait was unacceptable because if Evan did have infantile spasms, it would need to be treated ASAP. And so Evan had to be admitted to the hospital. But first we had to wait in emergency until a room would open up in the ward. This process took about 7 hours. Long day…

Tuesday morning rolled around and the video EEG started recording. I was instructed to push a button every time I saw a spasm and record it on paper so they could reference the video and the EEG readings. Within the few first hours, I was able to capture seven spasms and the pediatric neurology resident confirmed the abnormal activity on the EEG and took it to Dr. Mesterman.

Dr. Mesterman along with the epilepsy specialist were originally quite confounded by what they saw on Monday’s EEG and really wanted to see the longer video EEG results. Upon seeing the start of the video results, Dr. Mesterman was still uncertain if Evan had infantile spasms and wanted the expert opinion of the epileptologist. Since the epileptologist had already left for the day, we were asked to stay for another day and get a full 24 hr recording of Evan’s brain waves.

The full sleep cycle was useful in concluding that Evan’s brain activity was just too normal for him to have infantile spasms. Not only did it show normal activity during all cycles of sleep (less the sporadic spasms), he was also not regressing in his development even though his twitches have lasted for over six weeks. Apparently, infantile spasms are known to go downhill very quickly.

At this point, they firmly believe Evan does was not infantile spams (huge relief!!!) but they still don’t know what kind of spasms Evan is having.

In order to better understand why Evan may be having seizures, Dr. Mesterman wanted an MRI done. Again, as an outpatient, the wait time is about 4-6 months and although the MRI does not influence the type of medication Evan needed, it would still be better to know if anything was structurally abnormal in his brain. So we stayed yet another day to get the MRI done.

Cross-section of Evan’s brain from the MRI. His brain is developmentally aged at 3-5 months which would explain why he’s a little behind. Very normal for preemies.

Thursday morning Evan was the first one to get the MRI. Thankfully, nothing was structurally wrong with his brain but something is definitely functionally misbehaving. Unfortunately, there’s still a lot of unknowns in the world of seizures and epilepsy and so Evan shall remain an “International Man of Mystery”.

He has started seizure medication (Keprra) and we will ramp up his dosage over the next few weeks. If the medication works, he will be on it for about two years before they try weaning him off it. If the medication doesn’t work, they will increase the dosage and/or try a different medication. And if that still doesn’t seem to have any affect on his seizures, they may just recommend doing nothing because one has to weigh the pros and cons of medication side effects with medication efficacy.

A follow-up EEG has been scheduled for July 23 and hopefully we will have some better news regarding Evan’s epileptic condition.

On a VERY happy and different note, Evan can now laugh consistently! YAY!!!