Sunday, December 13, 2015

It's never as easy as I think it's going to be.  We ended up taking the whole week plus a bonus weekend! By Thursday afternoon he had not seized so I thought we were throwing in the towel.  His medications had been adjusted and readjusted to try to 'force' a seizure and it just wasn't happening. It was a strange feeling to be disappointed because he HAD NOT had a seizure. His doctor asked if we could stay a few more days to see if it would happen because we really need to know where his seizures are coming from in his brain.  Since we were already there we decided to go ahead and stay.  

His last EEG was in February of 2013, I believe.  In the past, Luke's EEG's have been fairly normal which is interesting given the structure of his brain in the first place and his epilepsy.  His EEG has changed, though, now showing 'epileptic spikes' coming from the back of his brain - the occipital lobe. These spikes are coming at all times we discovered no matter what medicine he was on and how much of the medicine...meaning that as the doctors messed around with his medicine this week he consistently had epileptic spikes with more activity during sleeping hours. Even without having a full blown seizure, the doctor was fairly certain that was probably where his seizures originate from.  It's really interesting to us, though, because that is one area in his brain that is NOT affected by polymicrogyria (PMG).  So it's essentially just about the only area that is not malformed but it is the area the doctors felt his seizures were probably coming from.  

Anyway, I will try not to turn this into a short novel!  So by Saturday I thought that the whole week had been in vain.  They had an answer...well probably they did but they didn't know for sure.  Frustrating!  Luke had been a champ but I felt bad because he hated having his head wired and rewired and was ticked off when they had to place his IV or even touch it.  He was tethered - literally - to a wall in ONE room for an entire week.  He did really well with it but I was really hoping for solid answers so that the likelihood of having to repeat the experience was slim!  

Of course, as you can probably guess, he finally had a seizure Saturday night.  His seizures are for sure coming from his occipital lobe of his brain.  The scary part that I found out today was that while he was laying on me and sleeping, according to the EEG reading he had been seizing for TEN minutes without me even knowing it.  He sometimes vomits after or during a seizure and he choked a little and I looked at him and saw his eyes deviated.  Keep in mind that we were in a room where someone was watching him via video at all times - not just me - and neither of us knew anything was amiss.  His seizure started in one side of his occipital lobe and stopped and moved to the other side.  All together he was seizing for about 45 minutes.  

As he gets bigger his seizures are becoming even harder to recognize.  He was having conversations with us and laughing and tooting (truly one of his favorite activities!!) while he was seizing.  His eyes were deviated the entire time he was talking to us. The doctors who were on call were not convinced and had the neurologist who had been seeing him all week pull up his EEG at home to read it before they administered emergency medication.  They kept telling me his seizures were atypical which we already knew!  

Lately before he has a seizure he has been telling us things like he feels funky or the lights look strange or something looks strange.  The doctor said that with where his seizures are coming from that would make a lot of sense.  

Since he is now having a lot of epileptic spikes in that area with or without medicine, his neurologist also wants us to get him tested by a neuropsychologist.  From what I understand she wants a baseline cognitive test to tell us if these spikes will eventually start causing regression.  This will help her determine how aggressive she wants to be to stop the spikes.  

Surprisingly, we went into the hospital on three medications and we walked out on just one. His EEG didn't show a change when he was on or off of those medications.  So we are going to try it and see how it goes.  We are nervously excited because the less medication we can get by on the better!  For now we have to wait and let his little system get back to normal.  If he continues to have break through seizures his doctor now has more information to decide the best way to treat his seizures.  

Our little charmer made lots of friends in the hospital and also decided he wanted to be an RN, too, like all of our wonderful nurses!  Everyone did a wonderful job trying to make his week go by quickly!  Thanks for all the texts, emails, visits and well wishes.  We are so thankful for all of our support!!!
Ms. Heather was wrapping his puppy's head just like him!  He was helping with the tape.

Ms. Amanda certainly needed help taking blood pressure!  His puppy was very healthy!

Trying to figure out how to bust out of the 12th floor....

When you're stuck for a week, you always have time for a little yoga!

Both puppies ended up needing EEG's.  They were very, very brave.

This is what intentional sleep deprivation looks like :(    

He wanted everyone who came in to write their names on the board.  Ms. Micah was one of our EEG techs and he added her name to the board.  

Monday, December 7, 2015

Hunkered down!

Things have been going really well for Luke.  He's is over a third of the way through kindergarten and loving it!  He is socializing more and more with other kids which is probably my favorite thing that is going on with him.  His teachers, therapists and aides have been working hard to make sure he is successful.  He doesn't like to say hi or bye for some reason and sometimes doesn't respond when he is spoken to.  One thing they've done is when he responds he gets points and after a certain amount of points, he gets to see one of the school's two therapy dogs - that is great for him!!  

Last year one of our big concerns was writing.  Now he's writing and almost - ALMOST - willingly! It's not always his favorite thing to do but he's doing it.  He's still behind in this area but he's gaining skills quickly.  He knows all of the teachers first and last names and I'm not sure that he's NOT calling them by their first and last names.  For Halloween, he decided he wanted to be one of his teachers.  It was really cute!  We're really happy with how things are going for him so far this year.  

His seizures have been popping up about once a month since July.  He has finally topped out of the medicine that has been really working for over a year.  It's still 'working' but not well anymore.  Since he's at the highest dose our doctor wants to put him on we have to figure out what the next step is.  So we're going to be spending a little time at Children's this week.  He's having an extended EEG.  We just got here this morning and he was NOT happy being hooked up but he's doing ok now.  The doctors are going to take him off some of medication this week to trigger a seizure on the EEG.  They will start by reducing some of it and possibly removing some until he has a seizure.  So far Luke has never had a seizure while hooked up to the EEG.  His doctor wants to see where exactly his seizures are triggering from before she decides what is next.  There's a surgical device called a Vagus Nerve Stimulator (VNS) that is the leading choice right now but she has to see his seizures on the EEG before she decides.  So far he's had ice cream, sour patch kids, chocolate milk and is desperately seeking a popsicle!  I'm trying to make it as painless as possible!!!  

Since he's been doing pretty good since the middle of October we're really nervous about 'rocking the boat' right now.  But we don't have a plan once he breaks through again and getting into the EMU (epilepsy monitoring unit) is pretty difficult.  So here we are...Hopefully we'll get some good answers and be able to step in the right direction.  As usual, we have been blessed with an abundance of help with Ben and with my classroom which we're very grateful for.  We'll be hunkered down for the next couple of days enjoying some time together!!  

Working on homework!!!