Silly brain

I’ve had a very eventful time lately.  The mom’s asked me not to talk about it until now because we didn’t really know for sure what was going on, but now that we have a better idea I can tell you all about it.

A few weeks ago, the mom’s started noticing that I was having these little muscle spasms.  It would mostly happen just after I had woken up and was just playing on my mat.  They were always very quick (only about a second or two) and it seemed to happen when I was grabbing my feet, so at first the mom’s thought it was just me losing balance a little bit.  But over time (and especially when my sleeping got all messed up over the Christmas break) it started happening a little more often.  Sometimes it would just be one or two spasms, but other times it would be 7 or 8 in a row and they would get a little bigger.  The mom’s made a big effort to get my sleeping routine back in order and the spasms seemed to go away a little bit but they were definitely still happening.

Finally, last week my lovely pediatrician was able to get us in for a visit to Sick Kids for an EEG.  It was on Thursday morning and I had to wake up at 5am and then stay awake until the test at 8:30am because I had to be tired.   An EEG is a test where a nice technician measured my head, drew all over it with crayons and then put all these little stickers on my scalp that were attached to pretty coloured wires.  The wires were able to send pictures of my brain activity to the technicians computer.  The test lasted about 1 hour and I had to be sleeping, and then slightly awake, then awake enough to look at flashing lights and then asleep again.  Luckily Mama C was holding me the entire time so I was pretty comfortable and only cried at the end when she and the technician were pulling all of the stickers out of my hair.  After that we waited around until we finally got to see the neurologist who was able to explain to the mom’s what’s been going on.

It turns out that I’m having something called Infantile Spasms (or West syndrome), which are a type of epilepsy/seizure disorder.  Kids with Down Syndrome are more likely to have these issues then typical kids, but also kids who have had an Hypoxic-Ischemic brain injury are also more likely to have these as well, so it shouldn’t really be a huge surprise that I’m having issues with them, but it was.  The difference between Infantile Spasms and other seizures though is that my brain activity between the physical seizures is all still all wonky (as opposed to only being wonky when I’m actual having the spasms), which means that it can cause problems with my development. (The mom’s found a really good article to help explain it to them, so if you want to understand it better you can read it too: http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/BrainandNervousSystemDisorders/Pages/Infantile-Spasms.aspx

All of this means that the doctors have to treat it very quickly and very aggresively so that we can stop the spasms and the wonky brain activity before it causes too much damage.  Luckily I have Down Syndrome though, and even though it’s more likely that we will get West syndrome, it’s all less likely that it will affect us as badly as typical kids so it’s actually really good that I have this extra chromosome (now it’s not just my cute chromosome but it’s my protective one too).   They’ve started by putting me on a new drug called Vigabatrin and they’ll check in two weeks to see if it’s working.  If it’s not then I’ll have to start a different drug that’s given to me everyday with a needle, so I’m really hoping the Vigabatrin works.  It comes with a lot of not so nice side effects though, so until my body gets used to it, I may be having a couple of not so great weeks.  It’s supposed to make me very drowsy and tired, but will also keep me awake at night.  It may cause me to gain weight (which actually made the mom’s happy) but may also make it harder for me to poop.  The big thing that made the mom’s unhappy was that it will probably cause me to loose the muscle tone that I’ve worked so hard to build up.  So, things that I’ve been working so hard on, rolling over, sitting up may get a lot harder in the next little while.  It also means that I’ll have to just be g-tube fed for a while too because I’m going to lose the muscle tone that helps me suck and I’ll also be very drowsy, so it would be dangerous for me to try and eat because I’m so good at aspirating when I’m not at my best.

So, it was a big week and we don’t really know what it means for the future.  I’ll have to be on the medicine (whichever ones works) for at least 7 – 8 months and hopefully by that time I will have grown out of these seizures.  But the doctor’s did say that it’s probably pretty likely that I’ll have a different kind later on.  So, like my veins and my sight, we’ll just add this to the list of things that I’ll just have to figure out as we go along.

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