Wednesday, January 13, 2016

Help and Hope

I just love leaving the neurologist’s office with such hope.  Robert’s seizures have remained largely uncontrolled his entire life; his seizures changing over the years but never going away after numerous medications changes, surgeries and the use of various medical devices.
Between seizures - declaring himself excellent

Robert now has seizure clusters just about every two weeks.  These are Complex Partial Seizures and last anywhere from a few seconds to five minutes. They come one right after another with a few minutes in between to just 10 to 20 seconds in between them.  His postictal period is usually very brief and he can answer questions almost immediately.

Questions like: “How are you doing, Robert?”

Always with an answer of: “I’m doing excellent.”

And then another seizure comes.

Just before another seizure
Thursday night this scenario played out during dinner (which, of course, shortened dinner  because we don’t want Robert aspirating on food or drink). I gave him his rescue medication and the seizures slowed. This gave my husband and I time to get Robert ready for bed and in the safety and comfort of his bed.  (My comfort and his – I am comforted knowing he is safe in bed while keeping an eye on him either in person or with the camera.)

He had a couple of more seizures so I gave him the next dose of the rescue medication.  It was late by this time and I watched him on the camera until I was certain the seizures were gone.

Robert woke up the next morning pretty sleepy (seizures and rescue meds will do that to you). I started to get him ready for the day (bathroom, bath, etc.) and the seizures started.

Again, I gave him the first dose of the rescue medication. (We are at 3 mg of Ativan for the first dose and the rule is no more than 6 mg in a day. I was concerned about giving him the meds in the morning since he just had them the prior evening but the neurologist told me every day “restarts” the 6 mg rule.) 

We have to stop the seizures so 3 mg of Ativan it is.

Finally at home after a long day in the ER
Variation of the usual questions were asked during the recovery periods: “Do you know where you are?”

At home.

“Do you know who I am?”


“Do you know who he is?”


“What is the dog’s name?”


“How are you doing?”


The seizures continued.  Step two of the rescue meds (2 mg of Ativan).

And continued. One more mg of Ativan.

The seizures would not stop.  The Ativan did not touch them, slow them or stop them.

I called the neurologist’s office when they opened.  They recommended going to the ER since there could be an underlying infection that wasn’t showing up yet. Plus, you know, the seizures weren’t stopping and there was concern about Robert going into Status Epilepticus.

That would definitely NOT be excellent.

I called the paramedics and they remembered us from the last time.  We also thanked them for participating in the neighborhood Santa visit and told them how much Robert enjoyed that. I was amazed at how they could be so friendly and professional all the while taking vitals and moving Robert from the bathroom to his wheelchair while we waited for an ambulance.

Apparently it was a busy morning for ambulances as they were on their fourth ambulance call of the morning and we had to wait for an ambulance to come from 15 miles away (in traffic, no less).

We waited. We talked. We watched Robert have seizures and tell the paramedics in between that he was excellent.
Enjoying Christmas with the Day Program staff
Once he was on his way to the hospital, I followed and thought about how this was the absolute worst seizure cluster Robert has had.  The possibility of him going in to Status Epilepticus seemed very real to me. I teared up and wondered if this was it for Robert.  I didn’t know what the rest of the day would be like. Would he continue to seize? Would I have to make all kinds of life or death decisions for him? Would he be able to tell me he is excellent again? 

The last time his seizures were this awful was when we were in Disneyland for Epilepsy Awareness Day so I could point to over-stimulation as the cause.

This – this was baffling as I had nothing to point to other than he had been super tired all week. I didn’t even have Disneyland as my consolation prize for dealing with such a stressful situation!

Thankfully, the seizures stopped fairly quickly in the ER. The doctors ran tests for an infection and checked his ammonia level because of the report of tiredness. Everything came back fine (even the ammonia level which was surprising because it is always high).

There was nothing we could point to and say that was the cause. The only nagging thought was that he had been very, very tired that whole week.  Even Day Program reported Robert was sleeping more than usual, taking two hours to eat lunch or not finishing his lunch. 

Now that is a definite sign of a problem.  Robert loves his food!

Robert’s case manager at Day Program is a good guy. So sweet and good-natured and very patient with Robert.  He also has epilepsy so I think that gives him a great connection with Robert. The director couldn’t be nicer either. Everyone at Day Program loves Robert.

We talked about Robert’s seizure cluster when I picked him up for his neurology appointment.  They both suggested that maybe he isn’t sleeping well and that perhaps he has sleep apnea. 

That could explain his tiredness so I mentioned it to his neurologist (actually, the Nurse Practitioner who then discusses things with the neurologist – I am perfectly happy with that arrangement as I love his NP.)

She thinks that could be causing his tiredness and his seizure clusters.  The neurologist doesn’t want to change the medication regimen until we get the results of the sleep study. (They’re testing his thyroid levels too since that can cause tiredness.)

I love the simplicity of that possible solution. What if he has sleep apnea? We can manage that and maybe, just maybe, his seizure clusters will be reduced or go away all together!

I just love leaving the neurologist’s office with such hope!
With the great help and support of the paramedics, Richard, the Day Program staff, the Nurse Practitioner, the neurologist (not to mention all the love and support from people that care about Robert), Robert just might get some relief from these seizure clusters.

Now that would be excellent!