The Good and The Bad

We've had some good days. We've had some bad days.

Good news is....Luke hasn't had any noticeable seizure activity since April. Truly grateful for that! And we don't take for granted any seizure free day. We are fully aware of the reality we could be facing in these regards and we thank God for graciously keeping Luke seizure free.

Overall, he is going fairly well.  Luke LOVES summer. He loves being outside, loves walks, loves swinging at the park, loves swimming and any kind of water play. He loves fireworks. He loves listening to birds in the morning. For many reasons, summer is by far his favorite season! So, we've had some happy days recently. 

Last month, Luke's neurologist changed his seizure medication. We are now on medication Number 2. The first one, Keppra, didn't seem to be the right one for Luke. Truthfully, I would have been ok staying on for longer. But when we described Luke's occasional meltdowns/rages, the doctor didn't feel comfortable leaving him on it. Keppra is known to cause significant behavior issues and so the doctor felt like it may just continue to get worse. 

So we weaned off of  Keppra and he is now on carbamazepine (Tegretol).   Sadly, the occasional meltdowns haven't subsided at all. 

I guess meltdown is an ok word. I don't really know what they are called in the medical world. (maybe a special needs parent reader can fill me in!) 

Basically, it goes like this:   

We'll be in the middle of everyday life.....doing anything really....playing at the park, riding in car, at a restaurant, watching TV, on a walk, at the grocery store....just whatever. And all of a sudden, for no apparent reason, an otherwise happy Luke just FALLS.APART.  He starts screaming, crying, kicking and causing all kinds of self harm.....pulls his hair, bites his tongue, scratches his face, seeks out a hard surface and bangs his head repeatedly. It is like nothing I've seen before.  It is so intense.  It doesn't happen everyday, but far more often than we would like. At this point I would say maybe twice a week. 

If we happen to be home when it happens....it's rough,  but manageable. If we're out and about when it happens...YIKES! 

There is no talking him out of it. No discipline that can take place. Honestly, I probably wouldn't understand it myself if it weren't for having a child who does this.  It is so bizarre and so intense and so incredibly hard to manage. 

So, say a prayer for me! And for him! When we are out and about, it's usually me with the three kids on my own. And so you can imagine the challenge. Luke has to be restrained (never a fun thing to do) because of the risk of injury. He is strong and seems to have super sonic strength during an episode like this. I'm pretty sure he could just about knock himself out, if he weren't in some way restrained and kept from hurting himself. 

I videoed Luke's most recent meltdown (they last about 20-30 minutes) and will show Luke's neuro at our next appointment. As terrible as they are, I do want to "wait and see" if this side effect will subside with time. This hopping around from one med to the next is so very much NOT what I want to do. It's rough on a little 5 yr old body. 

I hesitated to share in detail all his current struggles. But because there are other special needs parents following (and we all learn soooo much from each others' experiences), I wanted to be sure to give a good picture of what like is like for us right now.

Despite some grumpy times (and an almost total refusal to wear shoes these days!!!) Luke is enjoying his summer.  We are hearing lots of good language, lots of laughing and happy smiles. 

Luke's favorite holiday....July 4th!!

 

He's doing so good this year on the "kid-kid swing' (his words for big kid swing)  He is fearless and loves to go really high! He'll be our roller coaster lover for sure!