ABSOLUTELY NO WAY!
See how reasonable I am?
It is true that Robert has tried a variety of medications
throughout his life. Some have helped
and some have caused horrific side effects (from behavior problems and
depression when he was a teenager to causing balance problems and falls).
Before I took over Robert’s care, Robert was willing to try
any medication offered by the doctors. He even participated in clinical
research which studied medications not yet approved by the FDA.
By the time I took over his care which was almost five years
ago (can you believe it’s been that long?), Robert was on a strict regimen of
medications and had been for quite some time. His doctor and I were concerned
he was not remembering to take his medications when he was supposed to which
was one part of why I felt he could no longer live on his own.
A few years ago, his new neurologist suggested trying a new
medication. Unfortunately, this was met with disastrous effects, including a
trip to the hospital because of a bad fall and a scolding by my dad and Other
Brother about how I should never change his medication.
Oh good. I get to
take care of Robert, make difficult decisions about his care and then be judged
when those decisions don’t turn out as planned.
Okay, I get it.
But, I’m over that difficult incident. (Obviously.)
Robert was immediately taken off of that new medication and
I have rejected every suggestion of a new anti-seizure medication since then.
However, occasionally, Robert’s doctors will have to add a
new pill to his regimen that is not an anti-seizure medication (thyroid
medication, for instance). Robert is on Depakote (500 mg/3 times a day) and
this can cause his ammonia and valproic acid levels to increase which can make him
tired and foggy headed. The neurologist
added Levocarnitine
to his litany of medications in order to keep these levels down.
Robert also sees a Memory Specialist who would like him to
start taking Lactulose
in order to get the ammonia levels down even more. He suggested this a year ago
and, once he explained the medication to me, I balked.
Robert was living at New Home at the time and Lactulose
basically flushes everything out of the system, including anti-seizure medication. The timing of giving the Lactulose is
critical. I had zero faith that New Home
could adequately manage this new medication.
I felt Robert was at risk of great harm if I started him on it.
I talked to the regular neurologist about my concerns and he
agreed. Do not give Robert Lactulose.
This past June, Robert saw the Memory Specialist again who
was not very happy that we hadn’t started him on the Lactulose. I explained my reasoning and he seemed to
understand that I didn’t just go rogue on him.
However, since Robert was living with us, he thought we
would be able to better manage the medication and said he should start taking
it.
I was still not happy about adding this medication. Selfishly, part of my reluctance was because
of what it causes: smelly poop. After
Robert’s April hospital stay, he became occasionally incontinent with his
bowels.
Call me crazy but I was not that excited about trying a new
medication that would make more of a mess.
We checked his ammonia levels over the summer and after his
September hospital stay and they were on the upswing. His primary care
physician thought he should start the Lactulose (I had shared my reluctance
with him as well.)
Oh fine. I agreed to try it – Robert’s incontinence was
worse after this latest hospital stay so how much worse could it get?
I was afraid to find out.
We tried it out on a weekend because I wanted to see how
fast it worked and how we could incorporate the new medication without
impacting his day at his Day Program. I don’t want him to have embarrassing
accidents.
Much to my relief, the medication did not make things
worse. (Not much worse, anyway.)
To my knowledge, the Lactulose has not impacted his Day
Program activities or caused Robert any embarrassment.
Robert had an appointment with his usual neurologist on
Tuesday so I told him we had finally started the Lactulose.
He proceeded to tell me Robert didn’t need it.
Are you kidding me?
After working myself up to start this new medication and
finding the right time to do it (no one was in the hospital, it was on a
weekend where we were home and Robert was feeling halfway decent), I am now
told it isn’t necessary.
I had to ask: What about the other neurologist? He told us to start using it.
“It’s not necessary. His ammonia levels are not terrible.”
I have enough trouble adding new medications without the
doctors disagreeing about it!
Get it together people.
This neurologist increased one of Robert’s regular
medications (his Zonegran)
and started talking about new medications Robert hasn’t been on before.
Apparently, if the increase in the Zonegran doesn’t decrease Robert’s seizures
(which are close to 30 every month), then he wants to try a new medication.
Increase the Zonegran and stop the Lactulose.
At this point, I kind of hate to stop the Lactulose because
I’m curious if it actually brings down Robert’s ammonia levels and if that
would affect any behavior (alertness, for instance). I already got myself
worked up to use it, started using it and am managing its effects just fine.
I don’t think I want to stop it just yet.
My compromise is to continue with the Lactulose for a month
and get the ammonia levels checked at that time. Then, I will stop the
Lactulose but I will at least be able to tell Memory Specialist that we tried
it and it worked (or didn’t).
In the meantime, I will hope the increased Zonegran will
decrease Robert’s seizures. I really don’t
want to have to make another decision about new medications. It’s
exhausting!
As much as I hope for fewer seizures and no more medication
changes, I know the reality is that there will always be decisions about
medications to be made.
It would just help out a little if the doctors could agree
about these things!
Have you had the experience of different doctors treating
your caree and giving conflicting advice?
How did you handle that?
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