Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, May 19, 2017
Experimenting on You Children with Psychoactive Drugs, or I Hate Change, Part 7
So when you have a good doctor and two kids with a long line of letters after their names (ASD, AD/HD, and ODD), and you yourself have been taking antidepressants since the age of 19 (and really, if the drugs had been better then, should have started taking them at 12), you start to wonder if there are legal medicines that will help you out. The catch is, no medication is nor can it be officially tested on children. All of the responsibility is on you. Your doctor can run you through the options and describe possible outcomes, but you are taking the hit if it fails and things get worse. But, it might be better and it might be better enough to take the risk.
Back to 2007. So, Alex is in the disabled preschool program at Springville Elementary. Of course, being borderline hyperlexic, he's teaching himself to read on the side. But he cannot, for the life of him, sit still for more than 30 seconds in a 12 hour day. At this point, his AD/HD is doing more damage than his ASD because if he cannot sit and work through his ASD, our situation is never going to improve. His pediatrician is not comfortable diagnosing and treating his AD/HD, so we go to our family doctor, who agrees to help, and Alex starts taking Ritalin, the oldest and cheapest amphetamine based stimulant on the market. And life improves dramatically. For a while.
Growing children + amphetamines = a complicated life. Amphetamines suppress the appetite which suppresses growth which defeats the purpose of having a growing child. The child still needs to grow in order to be considered healthy. So you have to calculate the least amount of the medicine you can give them to reap the highest benefit. And then, when they grow and gain ten pounds and the efficacy of the medication starts to drop, you have to recalculate. And you do this again, and again, and again, and again.
Alex has been seeing Dr. Jay every 1-2 months since 2007. (A serious, responsible doctor will hand you the prescription but will require frequent returns because they want to monitor the results.) This has probably made us a fixture in the loss column for whomever provides our health insurance, forever. Yes, we have excellent employer-based health insurance. But we use it up, every year.
Honestly, in the ten years of medicating Alex, I don't remember all the different pills we tried. I remember that Ritalin worked for about two years and then we had to try a different stimulant. I remember we added an anti-depressant/mood stabilizer around first grade to help with his rollercoaster-like emotions. The summer before fourth grade, nothing was working, so we changed schools and went cold turkey on the meds, starting from scratch with new ones after he'd had about 6 weeks with nothing in his system. I think we added the tranq in fifth grade and changed to a different one last year.
Many people blanch at the idea of giving a child so many medications every day, even other medical professionals. And the truth is, we are experimenting on our children with psychoactive drugs. We are trying a variety of medicines in search of better outcomes. We try to explain Alex's emotional state as being a person going through life without a top layer of skin. Without medication, he has no emotional buffer; he feels everything and falls apart. These legal chemicals provide a barrier between him and the world that enables him to manage his emotions better. And the AD/HD meds mean that his isn't literally bouncing off of the walls. (Seriously. Not Kidding.)
Because Miranda is higher functioning on the ASD plane and less debilitated by her AD/HD, we didn't have to start her medications at age 3. We were able to wait until she was 7. In this world, estrogen is an advantage, even though we don't know why. So, for second grade, she started her own stimulant and then the following year we added an anti-psychotic which, for many kids on the spectrum, works as a terrific mood stabilizer. I still remember the lecture I got from a pharmacist last year about giving this medication to a little girl. She did fill the prescription, but she wasn't happy. We decided that this medicine helps Miranda tremendously, so we're going to keep giving it to her.
There are always risks. Side effects are difficult to monitor when your children can't tell you how they feel. I am perpetually paranoid about their weight (I think Alex has been ten pounds overweight once in his entire existence; Miranda never has) and I used to monitor every bowel movement (looking for signs of constipation). For some reason, they don't want me to do that anymore. And none of these medications can be given on an empty stomach so I spend all those early hours before school forcing them to eat something.
I have plenty of friends who have done what I've done, trying everything and, like me, ended up finding a cocktail that works. I have one friend who tried everything and ended up with only one drug that helps some. I have friends who have avoided chemicals entirely, trying therapeutic and naturopathic medicine instead. Every parent has to make a choice about what's best for their child.
Medication is not a perfect solution; there are always drawbacks. We've decided we prefer this outcome to our other current options. We do wonder if cannabis oil would be something that helps Alex further along the road. But what we have now is working, and, "As I always say, if it's not baroque, don't fix it!"
Posted by Sarah Boyle Webber at 10:18 AM
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