Tuesday, September 15, 2015

Sneaky Seizures

We have known since Joshua was a baby that his brain injury put him at high risk of having seizures. Joshua had his first seizure when he was about 5 hours old, and continued to have them for several days.   It took 3 different medications to get control of his seizures, but once they were controlled, after about 3 days, he was weaned from all seizure medications.
He came home from the hospital med free, but we knew there was a chance they could come back at any time.    The longer a child goes without having another seizure, the more the likelihood of having another one drops.    I once asked Joshua's paediatrician about it, and he said that if he did not have another seizure by the time he was 8 years old, there was a good chance he wouldn't have another one, but that there was always exceptions to the rule.
Of course, we had hoped that Joshua would remain seizure free, but have been alert to the fact that he may have them since he was a baby.  Over the years, I have seen many "odd" things from him, and wondered about seizure activity but never saw anything concerning enough to take it to his doctor.

That changed on Friday last week though.
I picked Joshua up from school, and took him to the shops in his stroller.   He fell asleep at the shop, which was unusual, because he doesn't often nap anymore and especially not in a busy public place like that.   He stayed asleep until I got him back to the car, and he woke up as I was getting him out of the stroller and putting him into his car seat.    As I went to shut the car door, I noticed his hands twitching out of the corner of my eye.  It struck me as being odd, but I shut the car door and put his stroller away in the back of the car.    I walked around to the drivers seat and climbed into the car.   When I looked back at Joshua, his head was slumped forward, his hands twitching and making movements with his lips.   I called his name a few times and he was unresponsive.
At this point, I pulled out my phone to video what was happening.    Getting a video of any suspicious events is the best thing to do, so that you have it to show a Doctor.
I began to record him, and demonstrate his lack of responsiveness, first by calling his name a few more times, then by touching his leg and hand and shaking him lightly to try and get a response, Finally I lifted his head up, at which point he focussed on me momentarily, but then his head and eyes drifted back off to the right.    Shortly after that, he began to come out of it and start looking around and looking at me when I was speaking.    I started offering him a chip, but it took a little while for him to figure out what I was saying it seemed.    Finally he took a chip from me.
I drove home, and he was drowsy in the car on the way home.  Once we got home, he asked to watch TV so I put it on for him, but he sat there looking dazed for a minute then laid down and went straight to sleep.  He slept for about an hour, and then when he woke up again, he was back to his normal self.  

I felt quite certain that he had had a seizure, and I thought to myself, he either had a seizure, or he is really really sick to act that way.   He did not show any signs of illness though.
Not wanting to over react, I decided to post the video on some online groups I am apart of, to draw on the collective wisdom of other parents who have been there.    The response to my video was overwhelmingly that it looked like Joshua had a seizure, and that what I had captured was exactly like their child's seizures.

I forwarded the video then, to Joshua's paediatrician and then anxiously waited for his reply.    When I got his reply, I was shocked.  He said that He couldn't be certain, but he did not feel that Joshua had had a seizure.  He did not think the event that I captured was typical of a generalised or partial seizure.    This stressed me out, because I knew what I had experienced with Joshua was not normal and knew in my gut that it had to be a seizure.   I did some reading and decided that it sounded exactly like a complex partial seizure and many of the parents who responded to my video online had also said it looked like their child's complex partial seizures.

I responded to him telling him that I had shared the video online before I sent it to him, and had many parents respond that it looked like their child's complex partial seizures, and that some of those parents had shared videos with me of their child's seizures and I felt that it definitely did look like a complex partial seizure.   I also insisted that my gut feeling was that Joshua had had a seizure.    I asked him what he thought it could have been if it wasn't a seizure because that was absolutely not normal behaviour for Joshua even just after waking from a nap, as he is typically a very active boy.  I also said that I felt the fact he was drowsy and had to sleep it off afterwards was very suggestive of a post ictal phase  (a period of recovery after a seizure).

I had already begun to plan out how I was going to seek a second opinion about the video I had taken.   It is difficult for us here, being a "remote area" and not having ready access to many specialists.    There is no Paediatric Neurologist here, but there is one that visits a few times a year.    I had planned to firstly ask the Visiting Rehabilitation Specialist this week if he knew much about seizures and see if he would look at the video, and if I had no luck there, I had intended on contacting the visiting neurologist myself, despite the fact we have never seen him before.
Thankfully though, when Joshua's Paediatrician replied to me, he had decided to forward the video on to the neurologist himself, saying that he was very good at interpreting videos.    By the time I had checked my email after work and saw the Paediatrician's reply, there was also a response from the Neurologist.   The Neurologist completed agreed that it looked like a complex partial seizure.
I literally jumped off the couch with joy after reading his reply and did a victory dance.   Not because I was happy that Joshua had a seizure, but because I was happy that my gut feeling had been validated.    I *knew* Joshua had had a seizure, and it was really stressful to feel like I wasn't being heard or agreed with.  I was ready to have to fight to find someone who would support what I knew in my heart to be true.   Thankfully I obviously managed to cast enough doubt in the mind of Joshua's paediatrician that he sought the second opinion himself.    I do like Joshua's Paediatrician, he is a great doctor, but Paediatrician's do not specialise in seizures or other neurological disorders, so they just don't have that specialised knowledge.   He has since asked if he could share the video of Joshua's seizure with other doctors, to assist in their training.  I have of course agreed, as it seems it would be very beneficial for all of them to see some different types of seizures in action.    For most people, when they think of a seizure, they think of a tonic clonic, which is the kind where a person falls to the ground and convulses dramatically.    The reality is though, there is many different kinds of seizures and they can be more subtle than you think.    I'm not going to share the video here, as it can be a bit distressing for some people to see, but I am happy to share it with anyone who wants to see it for educational purposes.  LOL

The neurologist was able to supply quite a bit of information from watching the video.   He believes it was a complex partial seizure, and that it likely occurred in the right temporal lobe.  
If Joshua continues to have seizures like this, he will need to be placed on an anti-epileptic medication to try and prevent them.

Statistics say that about 1 in 2 people with Cerebral Palsy will also have epilepsy.    They also say that once a person has a seizure, if they have underlying neurological risk factors such as Joshua does, there is about a 70% chance of them having another seizure within 6 months.
This means that unfortunately the stats are not really in our favour for Joshua to not have another seizure, but once again, we are in a period of wait and see.   We will wait and see if he has another seizure and if he does, then we will have to discuss putting him on medication to try and prevent him from having further seizures.

As far as seizures go, Joshua got quite lucky with the seizure he had.  They can be a lot worse.   And complex partial seizures can sometimes be a gateway for more serious seizures, so there is always the worry that if he does have another seizure, it could be worse than the one he experienced on Friday.

For now, we will just do what we always do.  Keep on keeping on, and keep on waiting to see.    

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