Monday, September 27, 2010

Serenity...

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 Max...to help him through this rough patch...to 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.

8 comments:

Leanne said...

Just here with you, Deana.

Thia said...

Praying for that peace for all of you!

Amanda Jaksha said...

For a laugh...
I find myself here every now and again and before I can even say god... I think of George castanza's dad, smile and scream " serenity now" at least inside. It usually makes me laugh, a little.
Hang in there!

Deana said...

Yes...I watched quite a few Serenity Now clips on youtube today!

Shachi said...

This must be so hard....praying for gazillions of peace right away!

Raymonde said...

I feel for you my cobalamin-c mom! Marc-Antony was at his worst while being on Keppra!!!! he's non-verbal like Max but since he can move around...he was constantly pulling and pushing us all day long and he even started to bite us! like you our neurologist told us that his body would get use to it with time! We started on March 17, 2009 (concentration 50mg per ml) and he was on 4ml (200mg) until he went up to 8ml(400mg. He stayed on it to give his body time to "adjust" until July 20, 2009..his little body never got use to it...he just got worst and worst instead... He was never happy ..cried a lot and was getting more and more aggressive, couldn't sleep... he has always always been such a happy, smiling, joyful little boy!! I did many research on Keppra and on one forum for epilepsy..one verbal person on Keppra said: "I would rather have seizures than feel what I feel being on Keppra! I am suicidal!" That touched me deeply...so after 4months of seing Marc-Antony so miserable, we had no choice but to beg the neurologist to stop the Keppra..I remember crying too over the phone!! a year has passed since then..with many more seizures...different seizure meds...and the struggle to find the right seizure med FOR HIM at the right dose.. IT WAS A LONG YEAR FOR US!!! So today...for the past 18 days only (I don't want to jinx it) he is on lamictal 100mg twice daily .(he can't get any higher on lamictal cause he will get crazy on us again) along with 20mg Frisium twice daily...he's back to himself and perfect in every way!! no seizure since sept 3..he's been sleep like a bear from 8:30pm until 7:30am WOW!!! even with a sinus infection on antibiotics! he's happy, so peaceful, loving, laughing out loud!!! With all that said...Follow your mom instinct don't wait too long like we did!..if Keppra doesn't work after a month or two...do what you have to do...I pray that it will work for Max!!! thinking of U my friend!

Deana said...

Ray...I remember it wasn't the best for Marc-Antony. We have been on it before for a month. It took him about a week to get past the initial side effects, so we'll at a week tomorrow.

I think the best thing we have going on, is Max's neurologist does not want him to be miserable. So, he said we'll try it for a month, and see how it ends up working.

I'm glad to hear the lamictal is working now!!!

She said...

and another reason I love you D.