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Topic Talk to your doctors Go to previous topic Go to next topic Go to higher level

By mylove On 2011.12.03 20:54
This is a kinda-on-topic post, and a kinda-off-topic post, but I think the majority of you here can follow where I'm coming from. I know it's a long post, but I hope you can bear with me.

I hear a lot about "call your doctor" if you have a problem with a medication, symptom, etc, but you need to remember that sometimes you will not be able to do that. I am beside myself with anger and worry this week because of something that happened with my daughter (who does not have PD, but does have depression).

She goes to college appx. 2.5 hours away, and only comes home on weekends and holidays. She was home for the Thanksgiving holiday and was able to see her PCP because she was home during the week, which allowed her to be here during clinic hours. She went in because she was having some issues with stress and depression (she's away from home for the first time, has a HUGE schedule, and is a pre-med student, which should explain a lot). Her doctor, who gets along well with her, prescribed her a new antidepressant, Celexa.

Celexa, like many other SSRI's, has a black box warning for increased risk of suicide, particularly in the very beginning of treatment and especially for young adults. I quote: "You, your family, or your caregiver should call your doctor right away if you experience any of the following symptoms: new or worsening depression; thinking about harming or killing yourself, or planning or trying to do so; extreme worry; agitation; panic attacks; difficulty falling asleep or staying asleep; aggressive behavior; irritability; acting without thinking; severe restlessness; and frenzied abnormal excitement. Be sure that your family or caregiver knows which symptoms may be serious so they can call the doctor if you are unable to seek treatment on your own."

Approximately one week after beginning Celexa, she called me unexpectedly in the middle of the day, incoherent and crying. She said that the symptoms of anxiety are unimaginable, and that she's spent most of one class in the restroom trying to breathe. She was very despondent, telling me several times that she "couldn't do this anymore" and that she felt like she was going crazy. I put Shakydog on the phone so her dad could calm her down while I placed a call to her doctor's office, because she was unable to do it.

I got through to her nurse, who has refused to talk to me in the past because my daughter is over 18. This time I begged her to get a message to the doctor to please call my daughter back on the phone, at least to tell her either to go in to the clinic at the college, or to change the medication that's causing the problem. I told her straight up that I feared that she might hurt herself if someone did not intervene. I comprehend that she can't discuss her treatment with me, because of HIPAA rules, but she CAN take info from a family member. (And how in the world is it OK for my spouse and I to talk to each others doctors, but it's NOT for a parent/child??? Does that make any sense??) I asked her if she was aware that the drug they'd prescribed her had a black box warning, and she said yeah, but the doctor was really busy that day and she just didn't think she was going to be able to spare a moment to call my daughter. She told us we'd just have to deal with it on our own.

Needless to say, I'm pretty livid. The website for the clinic says a lot of pretty things about how they pride themselves on their doctors being 'available at all times for their patients, including via telephone'. But that all stops if the nurse (or someone else) stops you before you GET to the doctor.

This doctor has gone out of her way in the past, calling us after hours on her own time to check in on my daughter when she had a blood clot emergency. It's hard for me to believe that if she thought that she was suicidal due to a drug that she'd prescribed that she'd say "Nope, I just don't feel like calling and checking in on her." So that leaves the nurse.

I also want you to know that it wasn't due to failure on my part of trying. I went through several people trying to reach the doctor, and told them ALL the same story, and told I had to go through the nurse to talk to the doctor. So - just be aware that 'just call the doctor' and 'just be persistent' may not always work. This is as much an issue for you as caregivers as it is for me as a parent, although I pray you won't run into that sort of a situation.

My next step is going to be to report her to the CEO of the clinic, but all that means nothing if my child commits suicide because of a prescription. Of course, we are taking care of things on the other end as well, but I still can't believe that her own family doctor would refuse to even check up on her. I'm trying to figure out a way to let the doctor know as well what her nurse is doing, as she may not be aware of it.

I'm floored. Angry. Out of my mind with worry. Pick your adjective.

By LOHENGR1N On 2011.12.03 23:38
ML & Shaky, First let me say I'm so sorry your daughter is going through something like this and that You both of Her parents are also. I feel your frustration,anger and bewilderment (shock? Stunned? disbelief?) all of the above and then some! Yes sometimes We (I myself am guilty) say call the Doctor. Thanks for the reality check! I sometimes forget the ways of most medical offices, my pcp included have a nurse or receptionist running interference and it's hard to get through. I have been blessed with a Neurologist Who is always available to Me. Office hours? I call He returns My call 10 minutes or less! Weekends? Never been even a full hour for return call. Over the years here I've been astounded by the treatment some patients receive. They can go on and on with a problem for years then the Doctor is going to test or check for this or that when My doctor tested for those things right from the get go. But I digress, Thanks again for the reminder and again I'm so sorry you're experiencing such a problem with the staff. Sincerely Al

By mylove On 2011.12.04 01:39
Al, I am SO glad you found good doctors and staff! Most of our other docs are great. This one has been a nightmare. I think this is also a new nurse for the doc, and while I sure understand the HIPAA privacy stuff, it's insane to block those kinds of calls, in my opinion.

In fairness I can say that I used to be a secretary myself, and those of us on the front lines so to speak are tasked with running interference to sift out unimportant stuff, BUT... when you call and say "I'm afraid my child/parent/etc is in real trouble" I think they should listen.

Thanks a bunch for letting me vent here. As I say, it isn't specifically a PD thing, but medical care for a child, etc isn't so different than for someone who isn't capable of handling their own medical care. I'm wondering if this sort of thing isn't part of the breakdown in communication that family members have with doctors when coordinating for care. I'm usually quick to think it's the doctor that's the issue, but this episode makes me realize how many other players are in the game and how easy it is to get important information stopped up somewhere in the pipeline.

I'm just kinda throwing this possibility out there because I couldn't believe it myself. I was always of the opinion that just calling my doc was enough. Apparently sometimes we have to go through additional measures. Food for thought.

One of the things I'd dearly love to see (and that some more advanced offices are now using) is email. I don't know how many times we've had some small question or an issue we just want to let the doc know that we've had to schedule an appointment for and wait a month to see them when we really didn't need to waste their time in the office in the first place. For our neuro, it's also a six hour drive, so we're motivated to make things count when we do go! But so many times it's just a 'gee I can't take this med, can we swap it for some other med' sort of question that could save the appointment slot for somebody who REALLY needs it. I know some boutique docs do email, but we're crossing our fingers that it will catch on!

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