Thursday, June 13, 2019

Medication is Risk vs. Reward

At some point many special needs parents have to make the decision about whether or not to medicate their child for their condition.
This is never an easy decision.
I mean, there’a s lot of shit to take into consideration. Immediate side effects. Long term side effects (Thalidomide was a wonder drug for women suffering extreme morning sickness, until the babies started being born with phocomelia). Stigma. Costs (at one point, the cash cost of Yoda’s meds was $1000 per month). Other treatment options.
Recently, someone in an epilepsy parent support group on Facebook asked about the choice to medicate (or not). This is my answer:
Medication is risk vs. reward. 
Medication has been a positive experience for us. We went from hundreds of seizures per day to 2-3 per day now. Before we found a better med combination, he would be so disoriented after an absence seizure that he once almost walked into traffic. But our meds aren’t perfect. They don’t give us 100% control, and his current side effects include a tiny appetite (but better than the tremor and hair loss he experienced from previous meds). But it’s better than him never being able to be more than a few feet from someone else because of worry that he would get hurt as a result of the disorientation. It’s better
than us trying to find a way to make pool noodles stick to the corners of the walls because he would often run into them just walking to the bathroom. It’s better than him missing 40-90% of what his teachers were saying. It’s better than him starting the same sentence ten times because he’s clustering so quickly he doesn’t realize he’s already said those words. It’s better than him spending hours on my lap or laying with me on the couch because his brain is rebooting every 6-10 minutes from a seizure and it’s scary to him to lose time like that. Today he’s sitting in the living room while I’m in my bedroom, watching a show he loves on Netflix, after doing some typing exercises for Occupational Therapy, and his chores, which include putting away dishes. He’ll make his own lunch soon (he’s 11), which he couldn’t do for awhile because he would forget what he was doing (the microwave died when he forgot to put his food in it before turning it on). After lunch, we’ll do some reading/recall, again for Occupational Therapy, and if it cools off enough we’ll go outside and play (which we still have to do together because he does still have some seizures and we don’t have a fenced yard). He may need services for the rest of his life, but what we have today is 1000 times better than what we had a year ago, and that wouldn’t be possible without meds.
I can promise you that I am most definitely a hippie mama. My house is fully stocked with medicinal teas, herbs, and essential oils. Just like you, I want the best for my children. When that means caring for a cold or muscle sprain, I most definitely go for the crunchy methods. But epilepsy? I’m not willing to risk the long term effects that could happen by playing with herbal remedies for that. No. 
There is a time and a place for crunchy cures, and there’s a time and a place for medications. You’ll have to make that decision for yourself. But for us, it was a no-brainer.

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