When Doctors Don’t Agree

It is such a dilemma for me when doctors suggest new medications for Robert. My first inclination, after careful thought and consideration, is:


See how reasonable I am?

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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?

(originally published at www.robertssister.com on October 10, 2013)

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3 Comments on "When Doctors Don’t Agree"

Profile photo of ejourneys
Oct 13, 2013

Oy, Trish! That’s insane. I think your idea of trying the Lactulose for a month and monitoring its effect on the baseline is great. It gives you information to go on. Plus, there’s a big difference between “good” and “not terrible.”

The only thing I can think of has to do with the neuro increasing the Zonegran. With the added Lactulose, that would be two drug changes and thus the risk of confounding variables if Robert has an adverse reaction. The more drug changes there are, the harder any side effects are to trace. So, maybe the neuro doesn’t want the Lactulose so that he can better monitor the increased Zonegran dosage.

The closest example I have to that kind of conflicting advice came when my partner’s regular neurologist and cognitive neurologist both recommended ABC therapies for her MS and the MS specialist we saw didn’t think the meds would do her any good. The way I see it, our situation was much more clear-cut: the meds had a slight chance of delaying her deterioration a little bit. On the other hand, psychosis was one possible side effect. I asked the neuro point blank if we could tell side-effect psychosis apart from her “regular” psychosis; he said no. Between that and the fact that my partner’s MRIs have held steady for four years now, we chose to not start the meds and to keep monitoring the MRIs.

Bottom line: Keep asking questions. :-) (((Hugs)))

Profile photo of Pegi
Oct 13, 2013

@Trish, oh my what a dilemma. We’re at the same point with my husband. There for awhile he tolerated just about every new med that was added for his myriad of ailments. The last year or so, since his immune system is so comprised, even going from brand to generic can cause issues. Usually the most delightful of side effects, GI, which are especially fun for someone in a wheelchair. We’ve gotten to the point that we question; if there’s good cause we try. If after a week minor side effects don’t disappear, we fight. This last hospital visit they had to put him back on blood pressure meds. He’s been off them since Feb with no problem, but for whatever reason he’s still running too high. I took the old meds to show the PCP, she said she would prefer he try the new meds. She did not anticipate he would be on the meds long, and the old meds had a longer rebound effect. After a week of GI issues, we went back to her office told her he wanted to go back to the old meds. She immediately agreed, without hesitation. But I do so hate that he has to be a guinea pig first! Hope all works out. You just keep questioning and advocating; you do the best job with Robert, and no one knows him better than you. Sending Hugs and Love to all.

Profile photo of Kathy
Oct 13, 2013

This is one of the reasons I listen and do as the Dr says to begin with and when things aren’t working out, I listen to what the Dr has to suggest and tell them what we will do or not do.
How frustrating.
Follow your heart Trish.