Saturday, April 28, 2012
One pill makes you small…
One pill makes you larger
and one pill makes you small
and the ones that mother gives you
don’t do anything at all…
Go ask Alice….when she’s ten feet tall….
“White Rabbit”, 1967 by Jefferson Airplane
One of the things I really wanted to avoid with both my special needs children was/is medication. When there is something neurologically wrong, many times it is just cause to use medication to correct the difficulty. And rightly so. There are some disorders that just have to be medicated to be controlled (i.e. seizures) Serious Anxiety disorders (such as OCD and panic attacks) also seem to be at the top of the list for medication control needs.
I ended up saying yes to medication for one of my sons due to his OCD; we just couldn’t see him go on another month without progress, being a prisoner of his own ruminating thoughts, and after four months+ of “therapy only” and alternative formulas (another 6 mos+), we decided to begin prescription medication. It’s all hindsight now and I do not regret for a moment the medication. In three years the med has only been adjusted 3 times, and changed back to liquid once, from a tablet form (liquid seems to work best for him, as we have recently proved). So…why am I pondering this? Well, recently I have talked with so many parents trying to decide about medication for their children with varying degrees of disorders. And I’ve come across so many parents that have medicated their children beyond recognition it seems.
I have a referral point I seem to always go back to: an excellent book I read BEFORE I ever knew we’d ever need to be taking our OCD/anxiety son for evaluation on an emergency basis, twice in one week. And what a week it was. Not my fondest memories whatsoever, but absolutely an essential move that has since led to recovery of his faculties/senses, improved his quality of life and helped him progress academically and socially beyond his anxiety disorder. Now granted, he still has trouble areas, but he has improved a lot. He hadn’t just been missing some of life, he had been missing ALL of life due to the disorder’s control over his mind. In his case I thank God for a medication that was able to help him gain control back of his mind again and make substantial progress and even enjoy life again, and feel good in the morning when he arose. I am also thankful that we have been conservative in our approach and have a doctor that is likewise, and have worked harder through therapy than anything. Yes, it costs money and time. In the end, my son has to learn how to cope above and beyond and, regardless of medication and without his parents. He will be a better person for it by being given the tools (coping techniques) to strengthen and support his abilities to ward off and protect himself from the tricks of OCD.
This book helped formulate my thoughts on what we could or should do with medication, pitfalls to avoid, and if there were other alternatives:
Against Medical Advice, by James Patterson (with Hal Friedman and Cory Friedman).
A true story of a young boy (Cory) who awoke one morning plunged into Tourette’s Syndrome as well as OCD/anxiety. A small excerpt reads:
Cory Friedman woke up one morning when he was five years old with the uncontrollable urge to twitch his neck. From that day forward his life became a hell of irrepressible tics and involuntary utterances, and Cory embarked on an excruciating journey from specialist to specialist to discover the cause of his disease. Soon it became unclear what tics were symptoms of his disease and what were side effects of the countless combinations of drugs. The only certainty is that it kept getting worse. Simply put: Cory Friedman's life was a living hell. <snip>
This young boy went through hell and back using literally 100s and 100s of medications over the course of grade school into high school; having been misdiagnosed from the get-go with ADHD and put promptly onto a medication for ADHD which made his Tourette’s Syndrome all the worse……thus began the cycle of: when one thing didn’t seem to work, the next was introduced, and piled on top of another, and so forth. He gained weight, he lost weight, he felt like a prisoner in his own body, was miserable and his disorder was still not under control.
It’s a painful, difficult story to read, but the family puts it out there for others to be leery of firstly, getting the RIGHT diagnosis, and of going down the medication path without exploring other ways, and trying HARD to implement other means to help children with disorders. Diets, therapies, more patience and working with them at home. Yes, it’s all a sacrifice, all of it. You may even opt to home school so they don’t have to be so heavily medicated, or medicated at all to control symptoms because they won’t have the ridicule of school peer mates all day, or the threat of being neglected or abused away from you.
Let me say I feel we have a VERY good child psychiatrist. He is conservative in his approach, and very sensible. He monitors the medication at regular intervals and he’s certainly doing all the right things. Having a reputable doctor of this kind is key. We began with below the lowest dose and have increased ever so minutely (just for growth-weight gain) to arrest the most prominent OCD features. So far, one 2 ml dropper of SSRI medication a day, is very conservative, and doable. Accompanied by A LOT of cognitive behavioral therapy and home work at home (and every where for that matter), we have made and known progress. We also have a very good cognitive behavioral therapist working directly with our OCD son for all these years. Our autistic son definitely has his quirks, and I wouldn’t dream of medicating those quirks out of him. I and his therapist work with him to give him other better habits in place of the quirks; we’ve seen improvement and seen where he CAN control himself….and how would we know if he was medicated…? It takes months of work, it’s not just a week or few weeks kind of thing …..the best results we’ve seen have taken up to 6 months. You have to stick with it. We can’t expect immediate results in a child whose neurology is off.
But, there is hope. I know I’ve lived it and seen it. It isn’t always pretty hope, some days can be very difficult and ugly down the path we journey to better quality and wellness of life for those with disorders. But all the same, it can be done.
If you think about it, read Cory’s story. You will find in it a wealth of information that will either be useful for you as a parent of a child with special needs, educate you to understand more about disorders and what families must endure, or direct someone else who is looking for answers.