Archive for May 23rd, 2017

Whole Family Support

We haven’t fully moved Abby’s epilepsy care to CHOP, but we are 90% of the way there, and the thing that has convinced us that we are doing the right thing is that they have an approach that treats the whole family, not just the symptoms, the diagnosis, or even just the patient in front of them.  They recognize that epilepsy affects not just the child whose medical record number and insurance plan they can bill, but the whole family who walks through their doors.  The realize that they can treat the symptoms – the staring, the shaking, the electrical interruptions in the brainwaves, but there will still be significant impacts on the quality of life of the child, the caregivers, the siblings, and the child’s teachers and social peers.    This is no small bit of understanding.  Not only do they understand these things, but they actually are working to do something about it.  Their ketogenic diet program includes the parent and child as equal members of the treatment team (and I’ve seen evidence of this being true and not just talk) – I’ll talk more about this later, but today, I want to talk about a different treatment modality, and one which I think many parents never consider – psychotherapy.

CHOP has a dedicated neuropsychologist as part of their Pediatric Regional Epilepsy Program (PREP) who is dedicated to treating pediatric epilepsy patients.  While knowledgeable about the ketogenic diet, her role is not limited to the keto team.  We would have consulted with her whether or not we were considering the diet (in fact, we had the appointment with her scheduled before we had pulled the trigger on the diet admission).    Kids and families coping with epilepsy are coping with a number of issues – the emotions surrounding the realities of any pediatric medical diagnosis are significant, and all the more so if that child has experienced a crisis of that diagnosis as we have or has an intractable diagnosis, as Abby does.  But there are also not-insignificant impacts of medication on a child – medication side effects include mood changes, but even the physiological changes (such as hair loss or weight changes) can have an emotional or social impact for which a child may need help finding coping mechanisms.  Additionally, there are other social impacts that no one ever speaks about – or at least no one ever spoke to us about until we came to CHOP – what do we do if Abby gets invited on a playdate or for a sleepover?  Do we explain her diagnosis?  HOW do we explain her diagnosis?  Do we send her rescue medication (which is administered rectally) and risk scaring off the other parent or just tell them that if there was a true emergency, they should just call 911, which is what I did before I had the rescue med (and would still do in the event I had to administer the rescue med anyway)?    How do we find and train babysitters who are competent enough to take care of four kids, one of whom has intractable epilepsy and another of whom has ADHD and is autistic and another of whom has asthma, but all of whom are, at their core, basically normal, healthy kids?  How do we, as parents, find any time to ourselves to get away from it all?  To relax?  To take three minutes to NOT worry about how we are going to find a babysitter in an emergency?  How do we find support to ensure we have a sufficiently supportive IEP?  How do we know that the neuropsych testing done at the school was thorough enough?

All these questions and more are reasons that CHOP has a neuropsychologist dedicated to the epilepsy program.  At first I thought, “How do they have enough work for her?” but now I realize that she is probably severely overworked!  I am grateful that they have her.  We had a 90 minute intake appointment with her and while it was sufficient, I feel that we could have spent twice as long in her office and still filled the time.  She recommended a couple of books, suggested that we review Abby’s IEP together to see if we can strengthen the supports in it, suggested having CHOP do their own neuropsychological testing (six month waiting list for that, but that’s okay – if she’s got better seizure control by then, it may be good to have it redone at that point anyway), and recommended that she do weekly CBT with Abby to help her with some coping skills for Abby’s mood and anxiety issues, and also to help get her “buy-in” to the diet as we draw closer to the program admission.

The more involve we become with CHOP, the more proverbial Kool-Aid I drink, the more I start to feel hope again.  I am not sure I realized how dark and twisty I had been feeling for the last six or seven months until this fog started lifting just a bit.  The last week (has it only been a week) has been such a huge mix of emotions all at once relieved, terrified, hopeful, scared, excited, and anxious – I’m ready to move forward, though.  Through all of it, I’m mostly hopeful.  Mostly the anxiety I feel is a good anxiety – I’m anxious that there’s so much waiting time.  I just want to be moving forward and not sitting around anymore.  I want to be taking steps toward better health, toward answers, not sitting in this endless quagmire of questions.  It’s time for the fog to lift.

I am so grateful to have found a team that values the WHOLE Family.  I don’t doubt that our previous neurologist also valued us as a whole, but the institution simply had fewer supports in place to hold us all up.  It’s time to give up our sentimentality for a single caregiver and move to an institution that can take on the burdens we have been juggling all by ourselves.  (who am I kidding?  It’s mostly been me, not “us” –  that’s the nature of being a mom, and it’s not because my husband isn’t willing; it’s because we moms micromanage this stuff.)

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