1. Scoop ½ ounce of peanut butter on a spoon (Creamy, preferably low fat)
2. Carve a little ditch in the peanut butter with pinky finger
3. Lick pinky finger
4. Empty three 150 mg capsules of Depakote into ditch in the peanut butter
5. Garnish with half of a 10 mg pill of Namenda
Then there is the Levocarnitine because the Depakote strips the body of its natural carnitine. The Colloidal minerals, which are important for brain functioning. The liquid Bs for energy. The multi-vitamin for his immune system. The probiotics for the digestive tract. The prebiotics, which are food for the probiotics. The calcium chews because the kid won’t drink milk. And finally, the fish oil, also good for the brain. But the real medicine, the drugs…that’s what the scoop of peanut butter is intended to help disguise.
This has been our morning and evening routine for 5 years. Graham is 6 ½, which means he’s been on this stuff for basically his whole life. It sounds strange to say this about my six year old, but I don’t know my child not on drugs.
And pretty much every single time I spoon that concoction into his little mouth, I feel a pang. That pang whispers, “Are you sure you know what this stuff is? Do you really know the long-term side effects? Do you even know the short-term side effects? Is this why he’s drowsy all the time? Is it helping? Is it necessary? Should I take him off of it?”
Which points to one of the hardest issues a parent of a child with special needs grapples with: If and when to medicate.
Obviously, the anti-convulsant medication was kind of a no-brainer for us: He was having detectible seizures that could become dangerous.
But the Namenda was a choice. An off-label choice. And it was a risk. It’s an Alzheimer’s drug. There are virtually no studies on the effects on kids. But our doctor, in whom we have great faith, has used it with a lot of her kids and says she and her colleagues in the medical community embrace it for kids with motor planning issues, and they are seeing great results. She recommended it for Graham.
The idea that this little boy who was having such a tough time sequencing the actions required to do all sorts of basic things -- put shoes on, draw and color, get himself undressed (let alone get dressed), wash himself, stack blocks – could be dramatically helped by a tiny little pill, was very seductive. And I plead guilty to having bought into the argument that if it could help even a little, it was worth it.
I realize this is a hot-button issue. There will be parents out there who will think this unconscionable. On the other hand, there are parents who have stopped reading this to Google Namenda with the hope that it could help their child.
Initially, I was in favor of trying this for Graham. Then for a long time, I just went along. Was it helping? When you’re doing four different therapies and taking several different medications, you’re tweaking his diet, adding a dozen supplements, and he’s growing in spurts, who can say?
For me, lately, and increasingly, the pang has been growing louder. This summer, we decided to get Graham off the meds. Both the Depakote and the Namenda. We think he has out grown his seizures. And we’re hopeful that whatever benefit he’s seen from the Namenda has translated into improved skills he won’t lose.
The weaning off process is not simple. It has been slow and careful, with blood-work to monitor levels, extra allowances for mood swings and sleep variations. But I’m ecstatic to say that yesterday was Graham’s first day medication-free.
Yet this is not the end of the issue for us. For five years, I medicated my child, and I wrestled with it. And I’ve got more tough decisions ahead of me. Graham’s attention span is pretty, let’s call it, brief. And I can already see that school is going to demand much more attention from him than he presently can supply.
I see the allure of a pill that might help him get through the day with more ease -- a pill that might help a kid, already held back a year and still clinging to the bottom-rung of his grade-level, get a leg up. But I’m increasingly wary of the pill-fix. And I’m beginning to back off of the belief that there even is such a thing. It seems everything is a trade off. And ultimately, Graham’s attention span is part of who he is: a unique kid who needs support and love, but not a fix.
I honestly don’t know what I will do down the road. We’ll cross that bridge when we get to it. But I can say with great relief that, for the moment, that nagging whisper is gone.
Tough, tough decisions.ReplyDelete
We all have to go with our gut and do the best we can.
We're facing big decisions with regards to meds right now. It's so hard and emotionally draining. Not to mention what it feels like for our kids. I agree with you wholeheartedly that it's always a trade-off.ReplyDelete