This Doesn’t Sound Good

Robert had an appointment with the neurologist Tuesday afternoon. 

It is a day later and I am still processing what happened.  Still kind of spinning, actually. 

We have had a rough few months trying out a new med and fending off an overwhelming amount of congestion (which I see as an oncoming pneumonia train). 

We have seen a rapid decline in just about everything as well as a lot of new behaviors and symptoms. Things have declined so much Robert is using a wheelchair at Day Program and sometimes around the house. 

He can’t move his right leg, is very irritable and downright belligerent, still has constant congestion, excessive saliva, flaky scalp, gum and water sensitivity, decreased memory, decreased appetite, trouble with spatial awareness, difficulty standing from a seated position and does this coughing/choking/gasping thing that scares the heck out of me.

Phew!

Robert would sleep 18 hours a day if we let him.  Actually, he does anyway because he falls asleep in the car, at Day Program, and at home. This week we started sending him to Day Program only three days a week so he can sleep in as late as he wants the other days.  On Tuesday, he slept until 12:45.  It’s not like he’s up all night either – he is in bed by 7:00 p.m. most nights and asleep shortly thereafter. 

I was convinced all this was caused by his new med, Trileptal.  Either that or he was experiencing a decline from a lifetime of uncontrolled seizures, surgeries, medications and falls. There is not a lot of research on what happens to adults after all this so I couldn’t figure this out. 

Mr. Google failed me.

I pushed for a neurology appointment but couldn’t get one for a month.  I was finally able to get it moved up a week which was something. I wanted suggestions on how to manage this and wanted to know WHY this was happening. 

After running Robert through a battery of tests and having him stand and asking if he felt sensation and checking his reflexes and grip, the neurologist asked about his incontinence.  Yes, he has bladder incontinence and has also developed frequent bowel incontinence. 

I was prepared to be told this was just the natural progression of uncontrolled epilepsy. I expected to have that discussion. I was absolutely ready for it.

Instead, I was given what I can only describe as the worst news possible. 

Cervical Disc Disease with Myelopathy.  The neurologist’s nurse practitioner (who is wonderful!) explained that the leg weakness and inability to use it, along with his increasing bladder and bowel incontinence were signs of this. She wrote an urgent referral for an MRI of the neck and told me to call on Friday if I haven’t heard from their office. 

At this point, I still had no idea what this was and she said with this degeneration Robert could become quadriplegic. The neurologist said he may need surgery. What? No. That can’t be. Do you really think he has this?  She explained that in Robert’s chart he had an MRI done in 2009 which showed the neck was compressed so she and the neurologist think things in that area have deteriorated.

I don’t recall this at all but that was early on in my care of Robert and there were a lot of things going on.  Unless I was told it was something serious and to worry about it, I let it slip out of my head.

Note to self: worry about everything – even things I don’t know to worry about! 

I could not even process this information.  This just does not seem real but there it is on the after visit summary: Cervical Disc Disease with Myelopathy.

I was so stunned with this diagnosis that I found myself laughing completely inappropriately when talking with my daughter. She and I had the same reaction: this is absurd. This cannot even be real. We were mortified by our fits of laughter but knew how awful, how terribly awful this new information was. I relayed the information to a friend and, again, found myself laughing.

I am losing my mind. 

This cannot be happening.  I still am hoping the MRI shows nothing and that all of these symptoms and behaviors are something else entirely. 

That is a possibility.

Is that hope or denial talking?

The doctor ordered lab work so is checking to see what else could be going on.  They don’t think his behavior is related to the new diagnosis but maybe it is.  I think I would be pretty cranky if all of a sudden I couldn’t walk.

In the meantime, I am searching for as much information about this as possible.  And fretting about what other things I don’t know about. 

Seizure First Aid

This bilingual poster, courtesy of the Epilepsy Foundation of Greater Los Angeles, is well worth sharing.  It's important to know it is okay to talk about epilepsy, it is nothing to fear and neither are seizures. It is okay to help and these posters let us know exactly how we can help.

I would like to add: do not make assumptions about the reasons for the seizure. I will never forget overhearing people talking about Robert while he was having a seizure and making the assumption he had overdosed on drugs. That experience was more than 30 years ago so I do hope people are much more educated about epilepsy and seizures now.

Let’s spread this information just in case!   

Click on the link or on the pictures to print or share!  

Running in Circles

Robert has had bronchitis at least four times this year (yep, we added one more) and even when he hasn’t been “officially” diagnosed with it, he has a great deal of congestion.  The past few months he has been sleeping in on the weekends until 11:00, 11:30 – even noon.  Through the week he wakes up early to get ready for Day Program but he is exhausted and sleepy throughout the day. 

Cherishing these moments

It is a constant battle keeping him out of the hospital.

I am grateful we had his dental work done and think this has contributed to his not being hospitalized this year.  His teeth problems were creating wonderful, little hiding places for nasty bacteria which was all too happy to visit his lungs when was sick. 

Robert: 1; Bacteria: 0.

With each new or persistent symptom I talk to his primary doctor, his pulmonary doctor or his neurologist. Usually all three.

Robert is on the new med (Trileptal) which has caused numerous side-effects. I want him off of the medication – we have given it a very good shot and it’s time to end this trial.  The neurologist (or at least his nurse practitioner) questions whether or not these symptoms are from the bronchitis.  That is a fair point because many of the side-effects are what happens when Robert is sick (mainly the crankiness and instability).  The other symptoms we are dealing with are extreme gum sensitivity (and, no, I am not brushing his teeth too hard) and excessive saliva. 

I want Robert off of the medication but the neurologist wants me to keep it the same until his appointment in July.

July!  Robert has to wait a month to get off this med?  Ugh! I don’t know if I can do that.

Instead, I lowered the dose to the previous “step” and am carefully watching for any increase in seizures.  I haven’t noticed a change so will keep him on the super low dose until we see the neurologist in one month.  I just have to do something before July.  Robert’s Day Program is calling me telling me he is sleeping all the time and can barely walk. 

There’s a definite problem.

The pulmonary doctor saw Robert a few months ago when he was on a much stronger dose of the Trileptal and Robert was sound asleep during that appointment. The pulmonary doc didn’t think that was good for Robert since he has trouble breathing deeply and that is contributing to his recurring lung infections. 

Yet the neurologist wants to keep him on it. I am open to keeping him on a lower dose if we can sort through the symptoms and figure out what is causing what.

Medication side-effects or Battle of the Bacteria?  I am at a loss.

Whenever Robert gets to the point of running a fever during all this congestion, I call the primary doctor or take him in.  Robert grabs a chair in the corner and promptly falls asleep. The primary doctor walks in the office, takes one look at us and is clearly frustrated. He too is at a loss.

He wrings his hands and basically tells me he doesn’t know what to do for Robert. I agree that we don’t want him on a lot of antibiotics.  The PCP looks in Robert’s direction, looks at Robert’s chart, looks at me, looks at the computer, looks at his phone and then punts to the pulmonary doctor.   

I initially ignore the obvious reluctance of the PCP to deal with any of this.  I tell him that Robert has been producing a great deal of saliva lately and he has also started doing this choking/gasping thing so I ask the PCP if this could be caused by the Trileptal or if it’s from his congestion.

Can someone please help me sort through these symptoms?

Could this excessive saliva cause him to choke since he has already been diagnosed with a swallow issue?  I remind the PCP Robert is on a modified diet because of the swallow disorder.

PCP checks his phone, looks at the computer and tells me Depakote creates excessive saliva.  “He’s on that, right? That’s probably the cause.” He was almost giddy with excitement that he found an answer.

Really?  Because he’s been on Depakote since the beginning of time and the saliva problem only started recently.

The PCP was visibly dejected.  I kind of felt bad bursting his bubble.

Robert was still asleep in the corner.

“Okay, then check with the neurologist about the saliva,” he says.

What about the gasping/choking?

“I will write a referral for Robert to see an ENT.”

Oh great.  Another specialist.  Another doctor to punt to.

We left the PCP’s office and a few days later (on Sunday) Robert started running a fever, had low blood pressure and a high pulse rate. All of his typical signs of an infection.

No! The Bacteria Battle will not be lost.

I checked his vitals almost hourly and stayed home with him on Monday. He slept in until well past noon, even with me rousting him to frequently take his vitals. He no longer had a fever and his vitals were better but I called the pulmonary doctor since his mucus was still greenish. I completely bypassed the PCP but the PCP seems to want me to bypass him so I do not feel any guilt about this at all.

The pulmonary doctor’s advice nurse told me to take him in to the PCP. 

Seriously, I am going to lose my mind if one more doctor tells me they don’t know and to take him to another doctor.

Instead, I took a deep breath and explained that I did that the previous Wednesday and he punted to pulmonary.  I gave her the run-down of the mucus color, vitals, etc. and she said she’d talk to the doctor and get back to me.  At least she was sympathy to my predicament.

When Robert finally woke up on Monday, he was exceptionally cranky.  When he told me to “shut up” I instituted a new rule: you use bad language or call people names you do not get ice cream or dessert. I empathized with him and told him I realized he didn’t feel well and the medications are causing behavior problems but we still have to live by the rules of the house.  One of those rules is that we are not rude and we do not say “shut up.”

Since Robert tends to have the short-term memory of a gnat, I told him I would write down when he behaved that way and I will show him my notes if he disputes whether or not he can have dessert. 

“I understand.”  We’ll see once I have to tell him he doesn’t get dessert.

I know he’s not well, I know he’s on this medication which is affecting his behavior but he has to stop being rude. If I have to pull out the Rocky Road ice cream card then so be it! (I feel awful about doing this but I am trying to change his behavior and dessert is very, very important to him.)

Speaking of, I think I could use some chocolate right about now.

Thankfully, Robert has some moments of fun and laughter but mostly he is sleepy and irritable.  It’s pretty bad when I am elated to hear one of his silly jokes.

After a couple of days the pulmonary nurse called me back and said the doctor prescribed antibiotics for Robert.  As much as I don’t want Robert becoming resistant to antibiotics I am thrilled that someone is giving me a lifeline. I am hoping this round will kick whatever infection he has and allows him to feel – well, excellent. 

I really want more days of him having fun. (For his sake and ours!)

The lower dose of the Trileptal has not helped his irritability, excessive saliva or his balance/walking issues but there is less gum sensitivity.  That’s something and at least there has not been a significant increase in his seizures on the lower dose.

I will keep him on this dose until I just can’t take it anymore or until his July appointment (whichever comes first).  Robert has an appointment with the ENT next week and is on the antibiotics for ten days. 

Something has to work!

In the meantime, I am getting dizzy from running in circles between all of these doctors.

I just want to know what exactly is wrong, what is causing all of this and how we can fix it.

I want to fix this.  That’s it.  I want to win the Battle. 

Is that too much to ask?  

Ending the New Medication Experiment

At least Robert is happy when he's eating!

We have been trying the “new” seizure medication, in varying dosages, since February.  Robert’s neurologist thought we should try Trileptal so, in February, started him on 300 mg in the morning and evening.

After a week, we had to give it up. 

He was dizzy, cranky and could barely walk straight. Oh but it was heartbreaking because the seizures had stopped!

I didn’t want to give up so quickly so at the next neurology appointment, the doctor and I decided we could start it up again at a much slower pace.  We started out with Robert getting 150 mg in the morning and 150 mg in the evening. 

We kept him on this dosage for three weeks. Robert was cranky again and having a bit of difficulty walking but it wasn’t near as bad as the side-effects while on the higher dose.  The seizures weren’t completely gone but the frequency had been reduced significantly.

After about three weeks there were more seizures. More seizures but his moodiness was better and his walking had improved.  With the doctor’s approval, I increased the Trileptal again.  This time we went to 150 mg in the morning and 300 mg in the evening.  Richard and I thought if he had the stronger dose in the evening the side-effects wouldn’t be so bad.

It was a really, really good theory.

We have kept Robert on the 150/300 regimen for over a month.

Robert’s balance and inability to walk continued to get worse. There were times it actually seemed like he was getting better and the side-effects weren’t that bad but after looking at the log we keep, that just wasn’t the case.

The reality is he can barely move his legs in the morning. It is routine now for me to help him out of bed in the morning since he can’t get his legs working properly. Once he is up, he swerves with his walker with his right leg usually a few steps behind the rest of him and his walker pushed out as far as his arms can reach. No amount of coaching can get his legs and arms and brain working in unison or even staying in the same zip code.

Robert’s moodiness also continued.  Robert has always had angry outbursts (one time when he lived in an assisted living facility he yelled for the nurse to “go to hell.” When I talked to him about it he insisted he just said that in his head and certainly wouldn’t say that out loud!)

Those outbursts are infrequent.  Now they are an almost daily occurrence.  Robert gets angry at anyone and everyone – us, the transport drivers, the Day Program staff, the respite staff and the dogs.  He is hypersensitive to everything: noise, water temperature – even his gums are sensitive.

Day Program called to tell me that they are concerned about Robert’s safety. They have to occasionally put him in a wheelchair because of his fall risk but now he is arguing about having to sit in a wheelchair.

In addition to all of this, Robert developed excessive saliva which was not helping his congestion problem. He even choked a few times on it! Yikes!

It seems so obvious that we shouldn’t subject him to this medication with these awful side-effects but I kept thinking there were other reasons for these behaviors.  Maybe it’s the bronchitis he keeps getting; maybe it’s all the turmoil of the house upgrades; maybe his swallow problem is getting worse. Maybe he has some other problem going on that is unrelated to the medication.

It actually wasn’t so obvious with all these “maybes” swirling in my head.  Plus, it is hard to dismiss the fact the medication is working to reduce his seizures.

His seizures have dropped from a high of 59 in February to 54 in March, 40 in April and 20 in May. Oh my god!  He is having a third of the seizures he had before starting on the medication. A third!!

It is only because of this that I kept Robert on Trileptal for this long. I kept thinking the side-effects would wear off.  That we would see the “old” Robert and he would be able to move from room to room with some wobbliness but not what we’re seeing now.  That once the house was back to normal and his congestion cleared up we would see his mood improve and his ability to walk come back.

I wanted to be sure we gave this medication enough of a shot before saying, “Nope. It’s just not worth the cost.” 

I finally think we did. 

I have come to the conclusion we have to take him off this medication. I have a message in to the neurologist so he can tell me how long I should take to wean him off the meds. In the meantime, I reduced the dose back to 150/150.

We gave this a shot.  A really good shot but it’s doing more harm than good.  We have to give up on this medication. I hate to quit or give up on anything but I know it’s the right thing to do.

I still have faith we will find something that works but I am not looking forward to increased seizures in the meantime.