déjà vu

Since last Monday—in a week’s time—we’ve taken Calvin to Boston to see the neurologist and dietitian, to draw seven vials of his blood and collect his urine. Then we took Calvin to his pediatrician to ensure that his ear infection had cleared up. Next he went to the hospital for a sonogram on his kidneys because of dubious lab reports, and yesterday Calvin faced a double-whammy having more blood drawn and an X-ray of his abdomen. We are headed to the nephrologist on Thursday.

We’re living a dreadful déjà vu of the early years when nearly every week we’d bring Calvin to see one specialist or another, often several. At one point in time, in the space of eighteen months, we’d seen the neurologist, the endocrinologist, the nephrologist, the geneticist, the gastroenterologist, the developmental pediatrician, the dietician, the urologist, the pulmanologist, the sleep specialist, the neuro-ophthalmologist and, of course, on several occasions, our beloved pediatrician. Add to this list diagnostic testing including 24 – 72 hour electroencephalograms, blood draws, nuclear medicine CAT scans, sonograms, MRIs, X-rays, one sleep study, and one eye surgery. And we can’t forget the trail of physical therapists, occupational therapists, the speech and language pathologists and teachers of the visually impaired who came into our home weekly. We had ourselves a bona fide cornucopia of experts trying to help us figure out what the hell was wrong with our kid, and what to do about it.

Usually, the specialists’ solutions were (and still are) to try medicine, though we’ve tried dietary therapies too. Not including the shopping list of drugs he was given as a preemie in the NICU, Calvin has been on Nystatin and Lactulose and Reglan and Erythromycin and Zantac and Miralax and Potassium Citrate and Carnitor and Neurontin and Melatonin. He’s had Diazepam and Atavan and Phosphenytoin and Amoxicillin and Cefprozil and Augmentin and Dilantin and Trileptal and Keppra (twice now) and Depakote and Clonazepam and Zonegran and Lamictal and Clobazam and Rufinamide. And he’s only seven years old.

I’m hoping that what the doc finds on the sonogram and X-ray is benign, that the blood work comes back normal this time and that we can take Calvin off of two more drugs that he’s been on since starting—and ending—the rigorous, high-fat Ketogenic diet that didn’t work to curb his seizures.

The daily intake of drugs is a reality for anyone who has epilepsy assuming they are not candidates for neurosurgery or the vagus nerve stimulator, like Calvin, and even then sometimes drugs are still necessary. Most people afflicted with epilepsy spend a lifetime on drugs, and while some enjoy seizure freedom it doesn’t come without the familiar, daily and long term consequence of drug side effects, most definitely the kind of déjà vu nobody would want.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It won’t hurt you one bit.

photo by Michael Kolster

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