Calling all doctors

tigersmom

DH’s behavior, both at home and at day care, has become more challenging lately, so I contacted his neurologist to request a medication adjustment. He has been on citalopram for a year, currently at 15 mg/day. He also takes 10 mg of donepezil (Aricept) daily. The doctor’s NP said that because of the possible effect of donepezil plus Aricept on his heart, they would want an EKG before upping his dose of citalopram. I took him for the EKG yesterday morning (don’t ask how that went), and the results were faxed to his neurologist as requested. All intervals were normal. I messaged them through the portal to let them know the results were there. Since then, crickets. So here’s my question: was it really that necessary to insist on this procedure before going up 5 more milligrams? And why did they think that getting an EKG on a mid-stage 5 dementia patient was no big deal? This is a dementia-specific practice at one of the largest teaching hospitals in a very large city. I am seriously considering removing him from their care in favor of a geriatric psychiatrist — not that there are many of those around even here. I began this process almost two weeks ago, and I still have no resolution. Or am I being unreasonable? The heartbreaking part of it was that DH was a cardiologist. He strapped those electrodes onto hundreds of people in his career. Now he doesn’t understand why we’re doing it to him, and it frightens him.

ThisLife

I'll just share one person's personnel experience. My DH was initially given 5mg citalopram for agitation and anger. It seemed to work for a while. As behavior increased at MC, they upped the dose to 10mg. Behavior continued. Two more increases in citalopram and added Depakote. He ended up in the VA ER where he was diagnosed with drug induced mania - a reaction to the citalopram. He spent a month in the VA psych ward.

Iris L.

Citralopram is an antidepressant and is supposed to be stimulating. You want something that is more calming. I suggest consulting a geriatric psychiatrist and possible in-patient care for titration of dosage. This may take a few weeks to find the appropriate dosage.

Also, if this is a recent change, check him for a silent UTI or other medical illness.

Iris

M1

I'm so sorry tigersmom. He probably needs something in the antipsychotic family like Seroquel or Risperdal. A 5 mg increase on citalopram is going to be like spitting in the wind. See if his PCP will prescribe Seroquel, a lot are comfortable with it now. And be the squeaky wheel on this…. unfortunately it's the only way to get things done. Sooo frustrating I know.

Marta

The other option would have been to switch from citalopram to escitalopram (a chemical cousin known as Lexapro), which doesn’t require ECG monitoring.
However, as you likely are trying to keep him from being discharged from day care due to challenging behavior, Seroquel is the better choice. You may run into reluctance by PCP to prescribe this med due to the black box warning; this issue has been discussed multiple times on these boards. Searching the threads on Seroquel can help you put this in perspective.

tigersmom

Many, many thanks to all who responded. @ThisLife , that is a scary story. I am sorry that that happened to your LO. Thank you for sharing it. @Iris L. , @M1 and @Marta , his neurologist has been pretty clear that they will only prescribe antipsychotics for delusions or hallucinations; he has only reported one visual hallucination a few months back. So from them it seems he either gets another 5 mg of citalopram or nothing. Since three days have passed since they received the EKG with no response, it is not looking good. I think it’s probably time for me to start looking for a geriatric psychiatrist. His PCP is pretty well connected, so I will start there. I did read the JAMA article on the dose-related citalopram study, so I think I have a pretty good idea of what is standard. And from that, it sounded like doing the EKG was the right thing. We live and learn.

M1

geriatric psychiatrist sounds definitely like the way to go. So sorry these other folks are unhelpful.

midge333

My DW was started on citalopram and seroquel by our PCP. Our PCP referred us to a geriatric psychiatrist who continues to manage both drugs. Your PCP may be willing to start your DH on treatment until you can get in to see a geriatric psychiatrist.

CStrope

Maybe they could just quit the Aricept then not have to worry about the Citalopram interaction. I've read Aricept is only effective for a certain window of time anyhow, and the jury is still out on what good it even does.

tigersmom

Hello, everyone. Just thought I would offer a brief update. DH will get his first dose of seroquel tonight. Through his PCP, I was able to find and connect with a geriatric psychiatrist ten days ago, who agreed to see him as part of his private practice. The fee for the first visit was a little heart-stopping, but I was willing to try it and see what might happen. Here’s what did. Yesterday, the geripsych (who is also a neuropsychiatrist) came to see DH IN OUR HOME. He drove at least 45 minutes to do this. I was able to introduce him as a friend of DH’s PCP, with whom he shared office space for 30 years. The doctor was kind, calm and patient with my DH, and allowed me to stay beside him to fill in the gaps, of which there were many. I kept my mouth shut and let him have his time so the doc could get the best picture of where my husband is. He spent 90 minutes with us, mostly in conversation, but he also administered a MOCA test, which no one else has done. DH could not draw the circle for the clock or the hands, but numbered it correctly. The 3D box was iffy, and the word memory, forget it. The doctor was very skillful at drawing DH out, and I was able to bring up some of the recent difficulties in the conversation. He also did a Neuro exam. At the end of the meeting, he said he would prescribe seroquel to add to his citalopram. He had also reviewed the 87- page record I sent him in advance of the meeting and said AD for sure, but he didn’t buy the VD part of the diagnosis. By the end of our time with him, I felt this was going to be the best money I had ever spent. Today I went to pick up the prescription. The copay was 15 cents, waived by the pharmacy because it was under a dollar. What a journey it was to get to that! Now that I have this drug in hand, I am sad that he needs it. One more marker I’d rather not face. But I am going forward. We are going forward. Wish us luck.

M1

Wow. Amazing service, glad to know it can still happen. But sorry it was that hard: it shouldn't have been.

Let us know how he responds to the drug. It should help.

ImMaggieMae

It sounds like you found an excellent geriatric psychiatrist. I thought house calls were a thing of the distant past. And 90 minutes no less! So happy that he finally is getting the care he needs. It’s so difficult to find good doctors these days. Praying that the antipsychotic works. It has been a godsend for my DH.

harshedbuzz

@tigersmom

That's a wonderful update. The 2 geripsychs dad had were amazing, too. Not drive-to-my-house-amazing, but still the most critical piece of dad's team after mom.

HB

MN Chickadee

Wonderful that you are getting some help. Out of curiosity, is it a "concierge" model with this psychiatrist? Do you pay a flat fee directly to the doctor (no insurance involved) or a membership fee or similar? We don't have concierge medicine where I live but hear it is taking off in other places.

tigersmom

Thank you, everyone. You share my bad news, and I wanted you to share the good. @MN Chickadee , this doctor practices at one of the large hospitals in my city, but offered to see DH in his private practice. He explained that he did not accept Medicare; he was not a Medicare doctor, and stated what the fee would be for him to see him. I swallowed hard and said that was fine, since he was offering to see him nine days from the time we connected. TBH, I don't know what this will look like going forward. When I need to talk to him, I call his private cell phone, not the hospital one, and use his private email. He always answers. Texts so far have been answered within a few hours. No followup appointment was made at the first meeting; DH is clearly beyond talk therapy. So going forward, I'm not sure what the total cost will be. I have not been billed yet and there was no mention of a contract. A monthly visit would be pricey but doable. DH has a very nice public service pension, and I figure we got more than three hours of this doctor's time on Sunday. So far, I am one satisfied customer. He had me at "I will come to your home," because I honestly didn't know how I was going to get my DH to another doctor's office.

LaneyG

I’m still trying to find another geriatric psychiatrist. The one he had is retiring and I truthfully don’t think he had much experience with dementia though he was very nice. Someone told me today to look into geriatricians, or GP that specializes in geriatrics. Thoughts?

harshedbuzz

tigersmom— IME, many of the best psychiatrists (and psychologists) don't need to take insurance to have a full schedule. Nobody DS ever saw (1 psychiatrist, 2 psychologists) took insurance and mom's doesn't either. Dad's both did but he was seen at the hospital's practice/MCF.

LaneyG— Some folks have had success with geriatricians and neurologists prescribing meds. We did not. The neurologist seemed disinterested in the management of behaviors at home. He did offer dad 25mg on Seroquel but refused to offer more.

Dad's geriatrician at the MCF didn't prescribe anything stronger than an SSRI or Ativan as needed. The MCF did have a great geripsych affiliated with them who handled anyone else.

HB

trottingalong

We don’t have any geriatric psychiatrists near us. The closest I could find was 2.5 hours away and that’s driving a winding, mountainous road. We have a tiny 20 person hospital with no psychiatric help.

jfkoc

Thank you for the continued share. It helps all of us.

tigersmom

@trottingalong, I am so sorry about that. Access to this kind of care is the only thing that keeps me in this big city, which I would have left long ago otherwise.