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| 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 appointment with Lucas' new neurologist who was assigned to us after his other neurologist retired. This was only our second appointment. We discussed Lucas seizure control, or the lack thereof, and change in medication dosage. We agreed about a month ago that we would increase his medication from 2 tablets twice a day to 4. He asked if Lucas still experienced seizures and yes, he still does once 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 he 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. 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. Daily seizures for a typical child is definitely troubling but for a rare child like Lucas, it sometimes is a given. The ER lab work showed that he was in the therapeutic range for the drug. I prepared to relay to him what had happened at school during our meeting yesterday, but at one point the topic of reporting me to child protective services came up and my mind just went blank, my trust for him went out the door and I was hesitant to share any further information with him. When I honestly told him why we did not increase the med as he prescribed, 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.
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 ones which fade away and sometimes I honestly believe they are independent of the medications we give and do very little to affect how, when and the frequency of their appearance, except for banzel (rufinammide). The seizure triggers are a mystery except for the ones he gets just after waking up in the morning and when he has gone a long stretch of time without them, he is prone to get clusters. He failed 3 other meds before which is typical of kids with this syndrome. One person had been on multiple AED’s, had more than one VNS implanted, had corpus callosotomy, sought out tests from Mayo clinic and in his mid 30’s show constant seizure activities detected on an EEG. We feel fortunate that Luki has some quality of life, not zoned out on too many meds or on G tube feeds, npo status for life, or dealing with bowel impaction or psych issues, etc.. that can manifest with this syndrome. But who knows what can happen in the future? Some parents report that their children experience paradoxical effects to meds or get the rare side effect that most people do not experience. If the chances are one in a million, they say their child will get it. When an increased medication dose correlates to injury, it scares me from maintaining that dose. Yes, I could have sent the neurologist an email him sooner 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 for the first time ever in their life consider doing the same? These are powerful drugs and need to be titrated slowly and cautiously and if an increase worsens seizures, titrating back down seems safer thing to do at the time. 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 do what I do for my child out of love, not out of fear of the CP and leveraging the latter to get me to give the best care is so demeaning.
I, too am a mandated reporter first as a volunteer at my son’s school and also as a registered nurse. ( Certificate of Completion from Mandated Reporter Training). I have taken a two-hour training class on what situations are appropriate to report which predominantly involves various forms of abuse, neglect and child trafficking. Using that power to affect a family negatively without judicious thought and consideration for the family is an abuse of power. - this point was an actual module of the course. A mother of a child with Dup15q shared that a gastroenterologist once recommended a surgery for her child for which she was in disagreement. The doctor threatened reporting her to CPS and out of fear, scheduled a consultation with a surgeon who agreed with the mother that the surgery was unnecessary. Afterwards, she fired her GI doctor. Threats like this undermines medical freedom for parents and a trust-based relationship between patient and physician.
Does the physician know best in all situations and their judgement supersedes that of the parent? Always? A head and neck surgeon once said my other son needed surgery in his ear when he was a toddler, I disagreed. I never followed up and he is perfectly fine now. Outside of the Dup15q clinic physicians, researchers and parents who are familiar with the condition, most have not even heard of the syndrome. Everyone has a right to refuse treatment but in the case of a minor, if there is a difference of opinion between the physician and the parent, does the former's legally carry more weight? I’ve lived with my son for 15 years every day and know that when his poop comes out a certain way he is lacking fluids. This neurologist has never even seen my son and this was only our second video appointment. Parents aren't all clueless about what is medically happening with their children. Of course, there are exceptions which is why doctors need to be cautiously sensitive and assess each situation individually instead of targeting all parents who refuse their medically trained recommendation. Anything other than that is a bruised ego trying to reclaim itself.
I'm sure the neurologist feels he is doing his part well and as a mandated reporter for child abuse, he has the authority to do so. And I am sure I frustrate him along with the uncertainty of dealing with a rare condition. 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 with a rare condition taken hostage by the hospital and ultimately committed suicide due to years of frustration and injustice. I've never sympathized more with parents of children with rare conditions and intellectual disability as these kids often have no sense of danger, tend to elope, injure themselves from seizures, self-harm and if they encounter an unempathetic doctor who dislike the parents for differing philosophy in medical care, they can easily be reported to the state. The doctor also said if my son injured himself from a fall and he landed in the ER but was not taking the exact prescribed dose, the physician can contact CPS against the parent for negligence. If he is injured even on the prescribed dose of medication can a parent report the physician to CPS? I think most rational doctors would not go there unless there were other signs of abuse/neglect, but some would and who needs the added stress and inconvenience of having to deal the CPS on top of managing the care of a medically complex child who requires total care in all activities of daily living?
What this experience highlights for me is the importance of trust in a physician/patient relationship. 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.
