M decided to celebrate by having two myoclonic seizures in the wee hours of the morning as he fought off what turns out to be pneumonia and we navigated the use of rectal suppository Tylenol, which is a different dosage than the oral we had used before he went on keto, and it ended up that by following the dosage on the box we were giving him too little so we couldn't keep his fevers down enough to keep the seizures at bay. Parental fail. Seven weeks of seizure freedom comes to an end.
Some Diastat, an ER visit, an antibiotic injection, and bonding with our compounding pharmacist later, he's on the mend and we're exhausted.
The gallows-humorous part of this is that tomorrow was when he was supposed to get his next dose of the pneumococcal vaccine, so between that and the International Epilepsy Day timing, you really can't fault his sense of irony.
For those who don't know - one of the extra fun parts of the ketogenic diet is that children's OTC medications have too much carbohydrate for regular use, so our options are to use a rectal suppository (which you can get for acetaminophen, but not for ibuprofen which works better for M), adult pills that are split, ground up, and dissolved into a syringe of water we can squirt into his mouth, or we have to have special low-carb versions compounded at specialty pharmacies (of which there is luckily one in our town - the next closest is 1.5 hours away). The easiest-to-dose of all of these is definitely the oral compounded ibuprofen but that only has a two week shelf life, so it's not something we can just keep at home - and there's no guarantee the pharmacist will have it available to make up for us on short notice. So long as M's seizures are all still with fevers, fever management is always a big stressor for us, and keto adds extra complications - but it's worth it if the seizures he *does* still have with those fevers are least shorter than before, or less severe, or if it helps prevent any developmental delays or regressions. We're still in "wait and see" mode on that.
So happy International Epilepsy Day. Epilepsy sucks.
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