Wednesday, April 9, 2014

New Medication – Take Two

The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult.  It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.” 

Robert has tried his entire life to achieve seizure control.  Our parents did what they could in order to reach that goal when he was a child.  When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against our dad’s wishes).  He volunteered to be in a study for the Vagas Nerve Stimulator and the Deep Brain Stimulator. 

The Deep Brain Stimulator did seem to work for him (and we found out later he was in the group that had the device “on”) but he developed a life-threatening infection and they had to remove it through emergency surgery.

When I took over Robert’s care, I heard him pray at dinner for God to allow him to not have seizures any more.

Then I heard him pray this again and again and again. 

Every day Robert has seizures.  Many times, multiple seizures a day and the seizures have increased in frequency over the last several months.  Robert does not usually realize when he has had a seizure (although he sometimes does and tells me he was able to fight it off.).  I found out pretty quickly that he gets agitated when I tell him he had a seizure.  He would argue that he didn’t have one. 

“I know for a fact I didn’t have a seizure” was the phrase I heard before realizing how much it was upsetting him to know he continued to have seizures. 

I don’t tell him anymore but I keep a detailed log of the seizures.  The only awkward part of this “don’t ask, don’t tell” policy is when we are in the neurologist’s office and Robert is asked how he is doing.  Robert replies, “I haven’t had any seizures” and I have to discreetly hand the several page log to the doctor. 

Robert then will usually fall asleep and the neurologist and I can discuss any possible treatments for his worsening seizures without upsetting Robert.

One of these treatments was Trileptal.  For the starting dose, it was 300 mg twice a day.

Robert had 100% seizure control for several days in a row. 

I would have been jumping for joy if he also wasn’t practically comatose – sleeping constantly, difficulty walking and being extremely irritable and angry when he was awake.

So no, Robert, the seizure control you pray for every night happened but at a cost too high.

Now we are trying again but at half the original dose.  (I have to thank readers here and on the Robert’s Sister Facebook page for suggesting it.)

The neurology appointment was just over a week ago and I wanted to wait until the weekend to start the medication at the lower dose.  The week was full of chaos due to my mom-in-law breaking her femur and Robert on the edge of the pneumonia cliff (he’s off the antibiotics and the cough has returned) so thought it best for “life” to settle down before starting the new med.

Sunday night was the first dose.

By yesterday, he woke up extremely tired and slow and needed a lot of assistance dressing. That could be attributed to still coughing at night or staying up past bedtime to finish one of his puzzles (it happens). 

This morning, he was again sleepy and slow and just the slightest bit obstinate.  Walking seemed to be a challenge but, again, he could just be sleepy.

He has had one seizure since starting the new med and that happened this morning.  We’re watching him like a hawk and just keeping routines the same and working at earlier bedtimes.

If the medication doesn’t work out this time, there is another one the doctor wants to try and then there is the RNS.  Robert’s neurologist has mentioned it, said it recently was approved by the FDA and he has even requested it already.  The RNS would be available for Robert by late summer so we have a little bit of time to try other medications first.

Why, when Robert is almost 49 years old without seizure control and exhibiting the devastating effects of that, do we still try these new treatments?

My answer is simple: Robert is not giving up on his prayers and I don’t want to give up hope.

Sunday, March 30, 2014 Virtual Care Conference

I am really excited to share the first Virtual Care Conference! Denise Brown lined up several presenters covering all sorts of situations caregivers face and topics of interest to caregivers.  I am honored to be a part of what I hope is the first annual conference! 

Richard (my husband and creator of did what he does best: teach! He demonstrated how to safely get Robert in and out of the car, how to use and fold a transport chair as well as many other useful tips involving various medical equipment. I was the behind-the-scenes camera person for his presentation and, well, let’s just say I will be keeping my day job but Robert was a real star!

G-J Heins and I also presented our care tips when traveling with our caree and helpful hints when leaving them in respite care.  Thankfully, this only involved talking with G-J and no camera work!

This was a terrific conference and I was thrilled to be a part of it.  It was made for caregivers – after all, how many of us have four hours to attend a conference?  Not many.  The Care Conference is a virtual conference and can be watched when there is a few spare minutes here and there (or if sitting bedside by your caree in the hospital or care facility). The four hour conference is broken up into several twenty minute presentations.

Please leave your feedback in the comment section so we can convince Denise to make this an annual event.  Tell us what topics you would like to see covered during future conferences or if you are interested in being a presenter.  Let me know what you liked about this conference and what you found to be most helpful.

(I am hoping by the next conference my filming abilities have improved!)


Tuesday, March 25, 2014

Purple Day for Epilepsy

Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization). 

Purple Day 2012
Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple bracelet – heck, my nails are painted purple and I might even break out my purple shoes. 

Why am I wearing purple?  After all,

Wearing purple is not going to cure epilepsy. 

Wearing purple is not going to stop the increased seizures Robert is having.

Wearing purple is not going to increase funding for epilepsy research.

Why am I wearing purple?  I am wearing purple because:

My brother, Robert, is 1 of 3 million Americans who has epilepsy;

Robert’s seizures are not controlled but he is hardly the exception. A third of people with epilepsy have seizures which can’t be controlled with treatment and which can lead to brain damage and death;

Robert wants to spread awareness about epilepsy and I promised him I would help;

I want to dispel myths about epilepsy. To be clear: it is not contagious; it does not mean the person is possessed and a person cannot swallow their tongue during a seizure;

Epilepsy is not something to fear;

Robert has Complex Partial Seizures – one of 40 different kinds of seizures;

But mainly, I am wearing purple because:

Robert has had epilepsy his entire life. I remember him as an energetic, curly-topped boy who was notorious for getting lost in shopping malls. He struggled in school but managed to take a few community college courses once he graduated high school (a feat our mother wondered if he would ever accomplish).  Robert lived by himself and with a companion (she also had epilepsy) and they were able to care for each other for many years.

Now, Robert lives with me and my husband because he can no longer take care of himself. He needs help taking his medications, getting dressed and cleaning up in the bathroom.  Robert wears a helmet because his seizures make him fall, he uses a walker because his balance is awful and repeats questions because his memory is pretty terrible. 

I have seen Robert deteriorate through the years due to the uncontrolled seizures, the medications, the surgeries, the accidents and the falls. He has had mood swings due to the medications and can be stubborn and obstinate as heck. 

But mainly, Robert teaches me that it is okay to enjoy the simple things in life. He is happy watching Family Feud and doing his Word Search puzzles (usually simultaneously so multi-tasking obviously runs in the family). He enjoys Rocky Road ice cream more than anyone I have ever seen and would eat it after every meal if we let him.  He has found comfort in what seems to be a direct pipeline to God – he prays for everything and everyone. I do not have this kind of faith but I admire him for his conviction and his beliefs.

Our family never thought Robert would live a long life. We weren’t being morbid but knew that with his determination to be independent and his uncontrolled seizures there was a strong possibility he would die young. He almost did – he had a seizure in a swimming pool as a teenager and was saved only because our dad immediately jumped in after him. He was in a coma for a few days but he survived.

It was after this coma that he felt his purpose was to spread awareness and education about epilepsy. 

I am wearing purple today to celebrate Robert’s determination, his persistence and his purpose. 

Please don’t be afraid to ask me about epilepsy and don’t be afraid to talk about epilepsy. 

Help Robert spread epilepsy awareness – wear purple! 

(And if that means buying a new pair of purple shoes, you have my full support albeit tinged with a little bit of jealousy!)

Sunday, March 23, 2014

Leave Room for a Little Sunshine

Rock, meet Hard Place but leave some room for a little bit of sunshine.

Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. 
Photo Credit: Matt Stevens, "Flow"

(He made it into the bucket about half the time and since I’m a glass half-full kind of gal, I consider that a win.) 

Every day I take Robert’s vitals: blood pressure, blood ox level, pulse and temperature.  Everything was in his normal range and by Friday he still hadn’t run a fever.  Great news but what I saw was the cough getting worse and the weekend upon us.  Is that a train up ahead?  It feels like Robert is on the tracks and I’m racing to rescue him before the pneumonia train runs him over. 

His cough has been subsiding during the day so he seemed well enough to go to Program. I sent him on Friday but explained I was going to call his doctor to get an appointment.

A few minutes later: “You’re going to pick me up at 1:30?”

Um, no.  It’s only 7:30 a.m. now and the doctor’s office isn’t open yet.  I have to call for an appointment.  Just go to Program and once I have the appointment, I will have the staff at Program let you know when I will be there.

“Thank you.”  He went back to looking out the window for the bus. 

I called the doctor’s office the previous week, too, but spoke to the advice nurse. I explained what was going on: cough, no fever, no other sign of infection.  “Bring him in” advised the nurse and doctor.

Well, no.  I knew I would take him in and they wouldn’t be able to do anything because it isn’t a full-blown infection.  The only thing that would come of it would be me feeling guilty for missing more work.  So I made the decision a week ago to not take him in.

The coughing got worse through the next week and I thought I saw just a tinge of yellow in the mucus. The cough was disrupting Robert’s sleep more and more. The vomiting started.

Robert went to Day Program and this time I called the doctor’s office for an appointment. I was still torn – still no fever, not sure what they could do but I needed guidance.  I needed a doctor to help me out since I was struggling with how to keep Robert healthy. I was wishing my brain would have been able to comprehend science because I would like to be a doctor right about now.

We had a late morning appointment so I picked up Robert from Day Program after handling some morning emails from work.

Not surprisingly, Robert’s vitals are fine at the doctor’s office. We are escorted into the office by a young woman who is always very sweet to Robert.  She calls him “Mr. Wright” and gets no argument from him about “I prefer to be called Robert.”  It sounds very official and important so I understand why Robert doesn’t mind.

Maybe I’ll start calling him that when he is in a cranky mood. 

Robert promptly falls asleep in a chair and the doctor soon walks in.  He looks at me and at Robert (he is the one who diagnosed bronchitis in February). He is clearly wondering why we’re back.

I explained my dilemma: Robert’s congestion is worsening and he’s throwing up at night from it yet his vitals are fine.  I do not want to over-use antibiotics since Robert is already resistant to some.  We need to hold those in our arsenal. 

“Doctor, I’m struggling with this.”

We discussed the pulmonary doctor visit, discussed the situation and he listened to Robert’s lungs. He went back to the computer and read over more notes and looked at a loss.

It was strangely comforting to know the doctor was struggling with what to do as much as I was. 

We are both in agreement that we don’t want Robert on antibiotics prematurely. He was concerned about us going into the weekend, though. He decided to order antibiotics for me to have on hand but to only give to Robert if he started to show signs of an infection.  He then punted to the lung doctor.

“Call him today to see what he recommends.”

We finished up; I thanked the doctor for his help and shook his hand.  He is someone who really does care and strikes me as someone who gets frustrated when he can’t find the answer or come up with a good solution.  As far as I was concerned, this was the best solution available.

At least until my magic wand gets out of the shop.

Robert and I went home and I got him settled with his lunch. Richard took over for the afternoon while I went in to work for a few hours. 

I called the pulmonary doctor and left a message for his advice nurse.  I explained the situation and the “just in case” antibiotics.  The advice nurse called me back after talking to the pulmonary doctor and said he recommends giving Robert the antibiotics.  Don’t wait for the fever.

As much as I struggle with keeping antibiotics in our back pocket in order to prolong Robert’s resistance to them as long as possible, it was a relief to be able to give them. Waiting for the fever is risky – once that happens it is a short trip to pneumonia and sepsis.

Robert has been on the antibiotics for a day and a half.  He coughed last night but didn’t throw up. We let him sleep until noon yesterday; waking him only for his medications (Taz gets extra credit for letting him sleep!). We are letting him sleep late again today.  He has a lot of sleep to catch up on after all that coughing the past few weeks.

It’s been a beautiful weekend of sunshine and Robert seems to be on the mend.  I am not going to think about whether or not this latest round of antibiotics will contribute to him being resistant in the future.  I can’t worry about the future.

These are difficult decisions but, for now, the train has slowed down. Heck, if I am being really optimistic, I will even say Mr. Wright is off the tracks.

I can even see a glimmer of sunshine through that rock and hard place.