A Breakdown of Trust in Our Patient/Physician Relationship.

 

Last night, after we changed banzel from liquid to tablet and increased depakene, per neuro orders, I think he absorbs the liquid form better.  We haven't seen these seizures in a while. 

Yesterday, I had a follow up video neurology appointment with Lucas' new neurologist who was assigned to us after his other neurologist retired.  We talked about Lucas seizure control or the lack thereof and change in medication dosage.  We agreed about a month ago that we would increase his medicaqtion from 2 tablets twice a day to 4.  He asked me then if Lucas still experienced seizures and yes, he still does one or twice a day usually triggered by waking up in the morning. We slowly titrated it up to 4 but wasn't seeing much improvement and in fact had a major fall at school from a seizure which landed him in the ER.  (See previous entry) I worried the new dosage may actually be exacerbating rather than reducing his seizures so we titrated it back down to 2 tablets. For whatever reason, once he got onboard with our case, he was very aggressive with seizure control maybe because he is new to the job and wants to do a good job. What is interesting is we never requested an increase in meds and considered ourselves very fortunate that he only has 2-3 seizures in comparison to other children with this syndrome who experience multiple clusters and more severe forms of seizures per day.   I referred him to the DEE-P webinar mentioned here and hopefully he listens. The ER lab work showed that he was in the therapeutic range for the drug. I prepared to relay to him what had happened during our meeting yesterday, but he seemed very upset that we titrated the medication back down without consulting him.   When I honestly related what we had done, he seemed very irritated and even mentioned that child protective services can be called if I am not giving him the prescribed dose from a physician.  Another mom suggested I lie in the future to prevent punitive reprimands.

We have been dealing with seizures for so long that having one or two seizures doesn't warrant an  immediate consultation. His seizures come and go, he's had all types and they morph into new one then fades and sometimes I honestly believe they are independent of the medications we give and do very little to affect how, when and how frequent they appear, except for banzel. He failed 3 other meds before which is typical of kids with this syndrome.  We feel fortunate that he has some quality of life not zoned out on too many meds or on G tubes or dealing with bowel impaction or psych issues, etc.. that this syndrome can accompany.  When an increased medication dose correlates to injury, it scares me from maintaining that dose. Yes, I could have sent him an email about why we decided to bring the dose down, but I didn't and that may be on me.  Lesson learned.  However, it was so upsetting for him to bring up CPS as a scare tactic to get compliance.  My whole world revolves around my boys and I may not be perfect but bringing out the threat of possibly having custody of my children taken away is a bit draconian.  Wouldn't any thinking parent who sees that increase in a med has landed their child in the ER with a bloody gash in their face consider doing the same?  Couldn't he just have said, "next time this happens let me know what you do. and we can move forward together as a team." or something to that effect?

I'm sure he feels he is doing his part well and as a mandated reporter for child abuse, he has the authority to do so. In situations like this, it is best to not piss these doctors off by provoking them.  They do get retaliatory and it reminds me of the mom who had her child taken hostage by the hospital and ultimately committed suicide due to years of frustration and injustice.  

What this experience highlights for me is the importance of trust in a physician/patient relationship.  Our old neurologist who had many decades of experience before he retired was so comforting to talk to and approach. Length of experience at the bedside really does matter.  I have requested our primary pediatrician for a referral to another neurologist because regardless of how knowledgeable a physician is, and how gung-ho they are to manage my son's seizures, when trust is broken, the relationship becomes dangerous, especially that in which power is not equal.  

I can see why there were so many COVID naysayers and antivaxxers because somewhere along the line, patients' voices were not respected, their unique needs were minimized so much so that when the anger and frustration reached critical mass, a whole movement and confusion was unleashed into all of society.  And I attribute all that, at its core, to the breakdown in patient/physician trust.