Epilepsy Awareness Month: Excited for EADDL

 

Richard and I are excited! We leave tomorrow for Epilepsy Awareness Day at Disneyland! We started going to this event in 2014 and Robert went with us. I remember being nervous about traveling with Robert but it was easier than I had feared (isn’t that always the way?) and we kept going back!

We couldn’t take him in 2023 because he was in the Skilled Nursing Facility and physically it would have been too tough for us. That was the year I had two cataract surgeries and two Mohs surgeries and I just didn’t have the energy it would take to care for him.

I really missed not bringing him that year. Last year only Other Brother attended the event because of that darn heart attack Richard had! (Although, frankly, I am relieved that if Richard had to have a heart attack he had it in front of an emergency room instead of in Disneyland!) Timing is everything.

This year we are going and we couldn’t be more excited. Our daughter, her husband and our grandson are going and Other Brother and his wife will be there too! Robert will be with us in spirit (and in photo form) so he can join us for our traditional photo in the Tea Cups!

I am grateful for the memories of visiting Disneyland so many times with Robert. He enjoyed every minute of it even though he always, always, always had seizures during the days in the park. Unfortunately, excitement was a reliable seizure trigger for Robert and it is pretty much impossible to keep someone from getting excited about Disneyland!

I wondered if taking him to Disneyland was worth the seizures. I was always considering Robert’s quality of life when I cared for him and even though the seizures were rough on him, I just couldn’t take that joy away from him.

We did our best to manage the excitement. The first year we went, we counted down the days on a chalkboard in his room. Two days before our flight was scheduled to leave, Robert ended up in the emergency room with a cluster of seizures that wouldn’t stop!

We never did the countdown to the trip again. In fact, Richard and I would be super low-key and casually mention we were going on a trip to Disneyland only when we were close to the departure date. We did our best not to show too much excitement when we entered the park but, I admit, that was tough.

Robert never ended up in the hospital again due to all the seizures (at least not around Disneyland time) and I have plenty of photos showing Robert smiling from ear to ear the whole time we were there.

I definitely think it was worth it.

Richard said today that going to Disneyland without Robert will be strange. Yes, it will be different and Robert will be missed but I am so happy we will have family there to enjoy it with us!

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?”

Trish.

“Do you know who he is?”

Richard.

“What is the dog’s name?”

Taz.

“How are you doing?”

Excellent.

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!

When Seizures Come by the Dozens

The unexpected nature of seizures is scary enough.  Will one strike while Robert is eating? When he is standing? When he is transferring from his walker to the wheelchair?

Robert’s seizures are the Complex Partial type.  He loses awareness, his head turns to the right and generally, there is labored breathing. 

They last from 2 seconds to 5 minutes.  We can usually tell when he is going to have a longer one because his head turns more to the right than with the shorter ones.  It’s as if his head is turned as far to the right as possible – sometimes the seizure starts with his head sort of to the right and then after a few seconds, his head turns all the way right. 

When that happens, I know we’re in for a few minutes of labored breathing, lips pursed together and, sometimes, a fall (unless we prevent it).  His whole body tries to turn right causing him to move out of his chair.  Richard or I gently hold onto him or block him so he won’t fall off the toilet or chair or wherever he may be. 

Those are awful.  Robert is confused afterwards although it is interesting to hear him answer the questions we ask him.  He has insisted I am not his sister, has thought Richard was his step-dad or brother and many times cannot tell us where he is living.

It must be very scary for Robert to be so confused. Richard and I gently remind him where he is and who we are and eventually the confusion subsides.

For months now, Robert has been having clusters of seizures within a short period of time.  These usually come by the dozens and have proven to be quite challenging to stop.

The first cluster of dozens was in November just a few days before we left for Disneyland.  The Nurse Practitioner (who I LOVE) thought the cluster was caused by all the excitement of the upcoming trip.  That made sense.

Until two weeks later when another cluster struck.

Then one in December. One in February and two in March (so far).   

The NP increased the dose of the emergency med when the clusters first started as another theory was Robert was getting used to the drug (Ativan) and it was losing its effectiveness. She told me the max amount to give him per day was 4 mg.

Twice I have had to give him more than the max.

Twice I worried that I was going to do more harm than good. 

Yes, twice I have worried that I was going to kill him by giving him too much of the medication.

If I don’t give him the emergency med the seizures keep coming and I am afraid he will end up in Status Epilepticus. 

I have taken him to the hospital during a cluster – the first time it happened.  Going to the ER is always a risk, however, because declines happen at hospitals.  It is best if I can manage the seizures at home. 

So Richard and I do our best.  We keep a log, time the seizures, give him the Ativan and keep the activity and noise to a minimum and let him rest.

(We also take him to the restroom a lot because the Ativan seems to activate his bladder like you wouldn’t believe!)

The logs have helped.  I keep a seizure log, a behavior log and a vitals log. They help me try to find the seizure triggers and they help give me a sense of control over something I absolutely have none. 

I realize the logs are an illusion of control but I use them and they are comforting.

They are actually very helpful, even if they don’t really give me the control I think they do.  However, I have reviewed all the logs and have a theory: I think the trigger has to do with him being overly-tired.  The clusters occur on the weekends (except one which happened on a Thursday).  I think he is exhausted from waking up early through the week and going to Day Program.

The other correlation is they tend to occur when he is congested.  He has had a really bad cough lately but his vitals are fine (no temp, pulse rate is normal and the oxygen level is normal as well). Maybe it’s a combination of the congestion and being overly tired. 

In order to make sure he is well-rested, we let Robert sleep in on the weekends, we have changed his bedtime to an hour earlier and the weekday morning wake-up to an hour later. We have declined morning transportation to Day Program just so Robert isn’t rushed in the morning and we can let him sleep in later than we would be able to if he was supposed to catch the van to Program.  

It still may not be enough rest for him.

Robert’s seizures are changing and getting scarier than they used to be but they will not deter me.  We will continue to look for the right medication, the right amount of sleep, the right triggers so we can more effectively manage the seizures. 

We have to – there is no other option.

Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
"excellent."

I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 

BUT, UNIVERSE, WE ARE STILL GOING TO DISNEYLAND!!

Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)