This Thing Called Hope

We are now done with Week 2 of Take 2 of the new medication.  We were this close to not making it through Week 1 but we all pushed through and decided to give this new medication more time.

Getting a nice card in the mail helped get us through Week 1! 

Richard and I were more prepared this time going into the new medication at the lower dose than we used before.  We knew what to watch for: excessive sleepiness, trouble walking and extreme irritability.  I was hoping Robert could tolerate the lower dose without those side-effects and I was also hopeful we would see a reduction in seizures like we did at the stronger dose.

I am nothing if not hopeful.

I wanted to wait to start the lower dose of the new medication until Robert’s cough subsided but his cough is fairly constant and just not going away. I finally started the medication at the end of a day in which Robert had five seizures (one being four minutes long).  It would have been nice to have Robert feeling one hundred percent so I could be certain any behavior or mobility changes were due to the new medication but the excessive seizures were the tipping point for me and I decided we couldn’t wait any longer.

Week 1 was difficult.  Robert was so tired, most days he couldn’t even manage dressing himself.  He was having difficulty walking and had screamed at his afternoon driver that he was lying about a story the driver was telling Richard. Robert was sometimes slurring his words and got so mad at me he threatened to call the police and have me arrested.

He also still had his nighttime cough and threw up a few times during these coughing fits.

It was not a fun week.   

Why would I even consider continuing the medication into Week 2 after that difficult first week?  Because we saw a decrease in his seizures.  The seizures didn’t stop completely like they did on the higher dose but they definitely decreased.  I was hopeful his body would adjust to the medications and that eventually he wouldn’t have the mobility and behavioral side-effects and we could continue to see a reduction in the seizures.

I even hoped once he adjusted we could increase the medication to the point of it stopping his seizures without further side-effects. Could this be the final piece to the intricate puzzle of his medications to stop his seizures?

Hope keeps me going but I find myself tempering it with logic and reality; spreadsheets and logs. Sometimes I wonder if I can ever allow myself to experience unencumbered hope.

The jury is still out on Week 2.  He continues to have trouble walking.  His right foot drags so much, he even has difficulty making it move at all – sometimes it seems “stuck” and he just can’t get it to move forward.  He is still irritable but that seems to be lessening – he hasn’t threatened to have me arrested but he did get so angry at Richard that he predicted a not-so-pleasant-yet-extremely warm place where Richard was going to end up.  

His seizures are still fewer than they were before using this medication.  He went a couple of days without any seizures and then has had one short one each day.  There haven’t been any cluster seizures for ten days and for that, I am extremely grateful.  Before this medication he was having cluster seizures several times a week.

As of yesterday, I thought he was getting used to the medication. He was alert, less irritable and back to his joking-around self. Today, he has slept most of the day (and that includes dozing while eating Easter Brunch) but that could be because he has become accustomed to sleeping until noon on the weekends or because the coughing at night is interrupting his sleep. 

The neurologist’s plan calls for increasing the dose after two weeks.  I’m not prepared to do that just yet.  I talked it over with Richard and we agree that keeping Robert on the same dose for another week is the best idea.  The seizures have decreased and the mobility and behavior issues might be turning a corner.  I don’t want to increase the dose just yet but I am not ready to give up on it either. 

I asked Robert (the worst self-reporter in the history of self-reporting) how he was feeling on the medication and no one will be surprised by his response:

“I feel excellent.” 

Going into Week 3, Robert feels excellent and I feel cautiously hopeful about the medication yet concerned about the continued cough and mobility issues. 

I will continue to use the seizure, vitals and behavior logs to logically determine if Robert should continue on this medication or if, perhaps, he has another bout of bronchitis or pneumonia working on him.

The logs make me feel a bit more in control of a very fluid and quite unpredictable situation, but hope lets me believe in the magic of excellent.

Bring on Week 3!