Monday, September 27, 2010


God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

I have heard this prayer through the years from my dad, and other family members who have struggled with addictions. It's the serenity prayer. And something that I've usually paired with AA, or addicts in general.

But, for the past week, I have found myself late at night - into the very early hours of the morning, reciting "God grant me the serenity to accept the things I cannot change.". I've not added on the "courage to change the things I can" bit...because I've mostly needed just a little push to get through the things I can not change.

Max has had a really rough few days. The new seizure medicine he's on, Keppra, has left him anxious, and frenetic, a heap of emotions, and sweating buckets, and wanting to be left alone, in the dark in the middle of the day. Once we get to night time, he's over taken by the tremors, or chorea, that flares up when he's on a new seizure regimen. And he can't sleep. Which kept us all up until 2:00 at least every day the past four days.

But, he's not having seizures. And that's the point, right?

Out of exhaustion and desperation, I called his neurologist this morning...hoping for a quick fix.

"Maybe he just needs a little anxiety medicine to help get him through this rough patch? Maybe he just needs Vitamin b6, I've heard that helps with the moodiness? Maybe he needs Ativan to make him sleep through the symptoms? Maybe he needs the name brand rather than the generic?"

He's good to stop in the middle of his extremely busy day to listen to me rattle off my ideas. And then simply says, "He just has to get used to it...there is no easy fix."

He went on to tell me it is a new medicine, and all are known side effects. His body just has to get used to it. We can't give him medicines to mask the new symptoms, because that can cause more problems that we can't see. We need to see how the medicine works in Max, and that means the side effects too.

Ppppphhhhhffffllltttttttlllll..........that's me deflating.

Max's neurologist has seen us in the very best of times, and the very worst of times with Max. But, I always feel like a big wiener when I cry in front of him. Whether in person or over the phone. But, rack it up to staying up way too many hours in the past few days, or just the exhaustion of not knowing how to help my boy, but I could barely keep my tears from forming and falling.

He said we could lower the dose a bit if we needed to take it slower to get him up to the dose we need, but we can't stop it, because it could cause seizures that we can't control.

I thanked him, and told him we would be in touch...and got off the phone and had myself a big ol' snot dripping cry.

Max is SO involved...but when he's not sick, no one seems to have an answer of how to help him be more comfortable. He will get past this...he did last time...he will this time. It is just going to take some time.

So, after I had my cry-out, I looked over at Max who was covered in vomit (yet another side effect of the nervousness he's had these past few days), and asked Steve to help me give him a bath. And while bathing him, I found a little of my resolve again.

They can't fix this, so we'll approach it differently, and we WILL get through it.

We need peace in our house for help him through this rough get the rest he needs and the stimulation he needs to be tired enough to sleep at night.

Because, when Max is happy, we're all happy. And when Max is not happy, we are moving mountains and lassoing the moon to try to get him back to his normal self.


Makenzies Miracle said...

I am so sorry you are having to go through this! I am praying!

HeatherS said...


I am so sorry you're going through this. It is exhausting and so very painful for everyone involved.

I LOVE the snot dripping cry! Thank goodness for a good release and the power of a nice calm bath.

Hoping for time for a nice, calm bath for YOU!

Deana said...

Pam, thanks for the prayers!

Heather, a nice calm bath sounds about right...I might have to give that a try!

Anonymous said...

I'm sorry to read this Deana, I hope you and Max work through this quickly.

Boliath xx

Unknown said...

Deana - I am so sorry things are so rough right now with the new meds. Big hugs to you! BIG ONES!

I hope you are able to get some rest soon, being exhausted is the pits when you have so much on your plate.

Sometimes there is nothing left to do but cry, right? Well then clean up vomit, maybe some more crying after that and a good piece of chocolate and some tea.

Deana said...

Boliath, thank you for your comment. He has had a much much better day! Lots of sleep!


I have had my fair share of chocolate these past few days!! And I learned the art of tea as a stress reliever in the UK...much is consumed here!