Gratitude!

Luke has been doing really well.  He is on his full dosage of his new medicine.  His new medication was increased quite a bit and he's still on full dosage of his old medicine.    He's a little grumpy, drooling a little, and waking up some at night but otherwise OK.  He seems back to pretty much normal which is nice.  It's a little stressful since we thought he was doing really well when he had the last seizure but we have to find a way to take a deep breath and enjoy the peaceful time we have right now.  We follow up with our neurologist in early May which I look forward to.  It's always nice to sit and chat with him in person. Hopefully there's nothing new to report to him!



Chowing on cupcakes!

I always mean to write when Luke is doing well.  However, I seem to share when we're struggling mostly so I wanted to do an update while he's doing well!  He is almost finished with his first full year in preschool through the school district.  With his medical difficulties it certainly has been a rough year.  Our daycare, which also operates as a preschool, has been incredible.  Without them we would not have been able to send him to the school district school.  The biggest reasons I wanted to send Luke to the school district was to have his therapies and have smaller adult to child ratios to really encourage the social interactions.  Our daycare volunteered to take Luke back and forth because Dan and I couldn't do it.  Socially he is making huge strides.  I still wouldn't say he's 'typical' but he is starting to make progress.  He talks constantly about a little girl named Reham.  He keeps asking me to call her mom so they can have a play date and a sleepover!  He's totally skipping just playing and going straight to sleepovers! 

Today I picked him up from daycare I was told he took off his pants outside!  And he's been telling everyone that there is a 'hotdog in his booty butt'!  What!?  He's turning into such a nut. 

It's really nice to have places where we feel comfortable taking him during the last few stressful months.  I know that both of his schools are well equipped to handle a seizure if it happens to occur.  We are fortunate because the only babysitters we use outside of family are two women who have known Ben and Luke for awhile because they are teachers at our daycare.  They know him really well and I feel comfortable knowing they'd recognize behaviors that were out of the ordinary.  He has quite a team of people looking out for him!

Speaking of teams, I also wanted to update about the Epilepsy Walk.  We are SO fortunate because due to the love our family, friends and even strangers, we have already surpassed our goal.  The walk isn't until the middle of June!  I am overwhelmed and feel so blessed.  If you are planning on walking with us, don't forget to join our team before May 26th so you can get a Seize the Day t-shirt.  I haven't been able to personally thank everyone who has shared/donated/joined yet but I will.  In the meantime, please know how much it means to us.  I have big hopes of funding going to things like better medicines to control epilepsy and seizure detection devices that will detect the kind of seizures Luke has.  Together I feel like we're doing something really important for Luke and many others and that is an amazing feeling.  So thank you. 

Every Little Bit!

We came home yesterday - Friday.  We decided to bring Luke home because we thought he could recover more quickly at home than in the hospital.  He's really tired, irritable and unstable but he's home and doesn't seem to be having any seizures.

I wanted to share some things about this latest episode and what it means for Luke and his epilepsy.  Luke's seizures are called partial complex seizures.  Typically - in most individuals that have them - these seizures last 1-2 minutes.  Luke still has some partial complex that last short amounts of time.  In his past history he would have some small ones, we would increase medication and they would go away.  Then last winter happened...and he had his first status seizure, the 20+ minute seizure. 

At that point we were still on Keppra to control his seizures. It became clear that Keppra wasn't going to work anymore so we switched to Lamictal. Keppra doesn't have any huge major side effects besides major anger issues in some kids.  When the nurse brought up Lamictal the first thing she talked about was the possibility of a severe deadly rash that can occur when you take Lamictal.  When researching it, it comes up as the first information about the drug on most websites.  But we took a deep breath and decided to go ahead because it was what our neurologist felt was best at the time and from our research we did, too.  Well, luckily it didn't cause a deadly rash in our guy but any time he even got a fever we freaked out. 

This past January it became clear that Lamictal wasn't going to cut it anymore.  We were increasing and increasing and his seizures were still popping through.  With another status seizure now in Luke's history, we decided to go ahead and add another medication - Zonegran.  It also comes with a long list of precautions - namely the possibly of kidney stones or decreased kidney function among other bad stuff...but we have to try to stop his seizures.  So we began with a small dose at night because that's the time we really run into seizure trouble. 

We also have two medications at home that are 'rescue medications'.  They are supposed to stop the seizure or stall it long enough to either NOT need medical help or for us to be able to get to the doctor.  When Luke has one or two small ones, the pill we have does seem to work.  But this last seizure - it came fast and strong.  He would only come out of it for seconds.  I gave both rescue meds and it did nothing to pull him out of his seizure.  They were also completely ineffective for the January seizure. 

 A lot of seizure medications also impair cognitive function which scare the crap out of me.  We've avoided them so far but we're starting to fly through medications.  Luke is amazing everyone with how well he is doing given his extensive brain malformation.  I would hate to have to do anything to change his level of success...although continued lengthy seizures could also have the same outcome. 

As I consulted Dr. Google I found out that it is rare for individuals with partial complex seizures to go repeatedly into status seizures.  I also either heard or read that once someone tries 4 different seizure medications the likelihood of being able to control your seizures via medicine drops drastically.  Since Dr. Google isn't always the best doctor to listen to, I was able to ask our doctor while we were in the hospital. 

Dr. Smyser is truly our hero.  He is not a wait and see kind of guy.  He answers our questions fully and is respectful and listens to us.  He is aggressive with Luke's treatment and developmentally I KNOW we owe soooo much to him because he made sure Luke was getting therapy from the moment he was born.  He very patiently and sweetly addressed my Dr. Google questions.

Yes, it's rare for individuals with partial complex seizures to go into status.  However given Luke's extensive brain malformation (PMG) it changes Luke's epilepsy.  A lot of individuals with epilepsy have no reason for their epilepsy - we do.  So that makes Luke's case and treatment tougher.  Also since he has an extremely rare gene mutation (MPPH syndrome) there just isn't enough information or research yet to say why Luke's seizures are amping up at the rate they are and being so resistant to several drugs. 

As far as the medication question - also true.  The more medications someone tries - the trickier it gets to control the seizures.  But he also said that there are more and more medications being developed and we still have some to try that could help.

Right now since we had the whopper Thursday night out of the blue, he wants to be somewhat aggressive with our medicine.  We are going to quickly increase his Zonegran to a much stronger dosage over the next three weeks as long as Luke is tolerating the increase. If that doesn't work, Dr. Smyser is going to refer us to a neurologist that specializes in epilepsy which means we probably won't be seeing him anymore.  He knows I am STRONGLY opposed to not seeing him anymore so he promised to work with us and that we might be able to see two neurologists:)! 

One of our biggest fears is the nighttime.  We have an awesome video monitor that we can watch.  Thursday night I was watching it and I saw Luke opening and closing his eyes.  He wasn't moving. He wasn't fussing. I thought it was weird as I watched.  Then he flopped over and I thought he was going back to sleep.  Then I heard him cough and I knew!  I raced in and grabbed him as he was about to vomit.  It was dumb luck that I happened to see him opening and closing his eyes.  And that was the beginning of a seizure that lasted about an hour and was followed by two more seizures lasting 7 and 5 minutes each - two more seizures that came AFTER he had 4 doses of 'rescue meds'.  Then he was given a drug called Fosphenytoin to finally stop it altogether.  He also required this drug to stop his January seizure.  If he ever has a seizure that he doesn't vomit after....well, that'd be bad. 

All of those medications finally stopped our guys seizure.  But the meds and the awful seizures left him drugged, not feeling well, irritable, unable to walk, slurring his speech, and I'm sure just plain scared.  Today (Saturday) he is walking but he can only walk a few steps without falling.  He is still slurring his speech and extremely irritable. 

I try to keep our blog upbeat.  I try not to overshare the stuff that you probably don't need to or necessarily want to know.  We ARE so happy with Luke's progress.  We ARE proud of how hard he works, how hard we work and how hard our family & friends work to ensure his success.  But these stupid seizures.  Argh.  I hate them. 

So I'm totally going to play dirty here.  We've had such an overwhelming response to our walk page so far.  We are already 32% of the way to our goal in just a few days!!  We've had such a generous response from family, friends and even friends of friends.  We can't tell you what that means to us.  The money isn't for us.  It's for all of the kids and adults affected by epilepsy.  They need better monitors that could help identify when they're having seizures.  They need medications that don't come with red level warnings of possible death side effects.  They need support.  We need support so we can do our best to keep Luke healthy, developing and happy.

There are a lot of great causes out there that touch our hearts and I know Dan and I try to help as many as we can.  Sometimes it might only be $5 or $10.  Every single bit helps.  Every dollar, every share will help with epilepsy research and support.  And we appreciate every single bit that we can get to do our part to help the Epilepsy Foundation of Missouri and Kansas. 

So if you can help, here is the link to our walk page:  Stephen & Luke's Seizure Stoppers!  I've had a few people ask if they should join our team if they were planning on walking - please, please do!  We'd love it!  I know Jaime's family, my family and many, many other families are very thankful for whatever you can do to help. 

The prayers and love the last couple of days, weeks, months & years has definitely been felt by us.  Thank you. 

Our sweet boy sleeping off his seizure/medication hangover
with his keys in hand.  He is *obsessed* with keys.  We usually
 don't let him have them in bed but since I'm sitting with him
 and he's had such a rough few days...we made an exception. 

We're back.....

Luke had a seizure tonight that lasted over an hour. We are at Children's again.  He had 5 doses of rescue meds to stop his seizures.  He's resting comfortably and we're waiting on a bed in the PICU.  We're hoping that we'll be able to come home tomorrow because once they get it stopped,  there is really nothing they can do for our sweet boy. 

He had a great day today so a big one like this was unexpected.  He rode his horse tonight and was laughing and talking happily. 

Lots of prayers would be appreciated.  

♡

Stephen & Luke's Seizure Stoppers!!

Stephen & Luke's Seizure Stoppers!! 
Seize the Day, June 21, 2014

If you follow our blog, you know the last few months have been really tough seizure-wise.  Luke's seizures have gotten better but honestly we're not convinced they're behind us right now.  He's still having issues with stuttering and drooling and clumsiness which seemed to be cropping up before the seizure winter from hell...

His new medication seems to be helping which we are thankful for.  We also have a lot of room to increase his dosage if his recent behaviors are indeed indicating he's starting to have small seizures again.  Now that he's had the longer status seizures unfortunately he's just more likely to trip into those. 

We are lucky because Luke's medications work for lengthy periods of time.  But the medications aren't a cure.  They're a Band-Aid.  That's all.  For some kiddos the Band-Aid sticks for a long time...for some kids the Band-Aid never sticks.  Ever.  When no medication will work and seizures are day in day out and unstoppable...that's called intractable seizures. 

Our sweet friend, Stephen, has intractable seizures.  He's had them since he was a year old.  Dan and I have been friends with his parents, Eric and Jaime, since college.  Dan and I knew each other in college but we weren't friends.  We were reintroduced at Stephen's baby shower - Dan and I were the only two single people there so according to Jaime & another friend, Dori, we had to be perfect for each other.  Turns out they were right!  So Stephen holds a really special place in our heart! 

We don't know how long Luke's medications are going to work.  We don't know if there is ever going to be a medicine that is going to stop Stephen's seizures.  We do know that we need your help. 

Jaime and I decided to team up this year for the Seize the Day epilepsy walk.  The money raised for the epilepsy walk will benefit the Epilepsy Foundation of Missouri and Kansas.  It's early, friends.  7:30 in the morning!  But it was fun last year and you can go home and sleep after!  If you're not in the area but you'd still like to sponsor Stephen and Luke, you can make your tax deductible donation to our team here. Please join us in Kirkwood for a fun morning supporting epilepsy and those who are affected by it.  Please feel free to share our page with your friends! 

Thank you for all of your support and love!! 

Seize the Day 2013

Yay!

This kid is unbelievably tough and brave!!!  He has been such a champ with all this stuff on his head and being confined to one room.  
So far, so good.  The EEG so far looks really good.  He hasn't had any big events that we were worried about so we're still not sure what that was. However he's been chatty,  happy,  silly. ... Back to his normal self.  The doctors stressed repeatedly that this is just a glimpse of time and just because it looks good right now it doesn't mean that it will look like that in a few days.  I get that.  I do.  But what the EEG  and Luke's behavior mean to me right now - at this moment in time - is that he seems really, really good for the first time in a long time.  I'll take it! I know this is something he'll always struggle with but right now our happy,  sassy boy has made a strong reappearance and that is great! 
We're staying one more night to be on the safe side which is fine since we're already here.  We'll both be happy to get home tomorrow. We'll be praying that this new medicine continues to do the trick for a long time! 
Lots of love from us!

EEG

Ha!  Well Luke and I are waiting for a call from Children's to finally go in for an extended EEG. We'll be there hopefully only overnight.  He started his new medicine last week and things were still really sketchy. We got the call that we were getting in for the EEG Friday.  Saturday. ... He slowly started to improve. The last two days he's really seemed back to normal.  I'll feel better when the EEG comes back clean.  So we're hoping for an uneventful night and to be able to put the last two months behind us for quite awhile!
The picture is from our last hospital stay....This will be the look on his face in a little while!  Say a little prayer for a boring day with lots of treats and apple juice for Lukie!

Waiting for...

 

Nothing.  We're waiting for nothing to happen.  We're still struggling with seizure control after many medicine increases.  The longest Luke's gone without a seizure since right after Christmas is 9 days.  So we're waiting for a long, long, long period of absolutely nothing. 

His seizures have been small but keep cropping up.  Dan and I are constantly worried that they're going to erupt into one of his 'big' ones.  It's hard because there are no definite signs that a 'big' one is coming.  When we had the last major one, I thought he was on the road to recovery - finally and he SO wasn't! 

Luke also has a multitude of questionable seizure signs.  He has random bouts of stuttering, clumsiness, diarrhea and fussiness that seem to point to seizure activity.  It also leads us to believe that he is having seizures that we can't see because some of the signs will start to appear before we have noticed a seizure.  Yesterday he started randomly choking and gagging on his food which he hasn't done in since he was tiny which was also concerning. 

Some of his seizure signs could also be attributed to illness or to normal three year old behaviors.  However when what seems like the stomach flu (diarrhea) doesn't pass on to the 5 year old or anyone else in the family...that's weird.  Or when he wakes up and sits up crying and holds on to us tight for a second and then drops back down to sleep repeatedly.  Strange.  Or when he starts randomly crying and then can't walk a straight line for a few minutes.  Not normal.  Or when he wakes up fussy and then stops talking for several hours when he's normally a chatterbox.  Weird.  Or when we give one of the stronger seizure meds and his stuttering completely goes away for a couple of days. All of these things help us to know what is unfortunately going on.

His seizures are still mostly happening in the middle of the night which is also stressful.  We feel like Luke knows when they're going to happen a lot now and he gets really upset.  It's heartbreaking when he starts crying and tells us he doesn't want his 'frow up bowl'.  (He hasn't had a throw up seizure since the hospital but he still remembers his 'frow' up bowl that he hated.)  It's good that he knows when they are about to happen so that we can be with him but we're both really worried about his seizures continuing to change and him NOT alerting us to the fact he's having a seizure.  We've been looking into night time devices that would alert us if he was having low oxygen issues but there's not that much out there for that.  A traditional epilepsy mat wouldn't work for Luke because he has no movement associated with his seizures.  We are looking at one device that would monitor oxygen levels overnight because that was a concern with both of his big seizures but not sure what hoops we have to jump through to figure it out. 

I was able to talk to his neurologist today.  We're going to go ahead and switch his seizure medicine to one called Zonegran.  Dan and I both feel like we've increased the heck out of the Lamictal and it's not holding off his seizures.  Hopefully this one will kick in quickly.  We're also going ahead with a 48 hour EEG in the near future.  Our neurologist has been hesitant in the past because we knew he was having seizures so there was no point in doing the EEG.  We're concerned that there may be more seizures going on than we're aware of so we are going to go ahead and get that checked.  Although hopefully by the time we get it scheduled we'll be on the new medicine and this will be past us.  It will be nice to have the peace of mind, though, that he's really not having anything funky. 

Anyway with all of this &*$# going on, Luke is still doing great otherwise.  He's doing well cognitively and he seems to be making gains socially.  He has been tired and cranky a lot but that is understandable.  We continue to have a ton of amazing support and we are truly thankful.  Sorry this is a mostly cranky post but I just needed to vent a little.  We are always, always thankful for how well he's doing but please hope for a little 'nothing' for us!