Thursday, May 17, 2012

Club Med-ication

To medicate… or not to medicate?

This is the question I have been struggling with for the better part of two years.

When Bianca was diagnosed she was given a primary diagnosis of classic ASD and a secondary diagnosis of ADHD. We knew she was autistic long before her diagnosis and already had her in therapies, the ADHD I never really thought about, but it was not much of a surprise. Bianca was constantly moving. From the time she woke up, until the time she passed out she was on the move. She ran from point A to point B almost all day and she grabbed everything in her reach. Bianca also had a low attention span and  wouldn’t sit still at a table when you were trying to teach her something.

Bianca also (as I have often documented, Tweeted, Facebooked about) needed little to no sleep. Three hours a night for a couple of years was about all she needed. The other 21 hours, she was on the go with lots to do and apparently not enough time in her 21 hour day to do it.

Is “Facebooked” even a word? It is now.

So as our doctor explained our options, medicating Bianca came up. The doctor explained that we should think about giving her something to slow her down so that she could maximize her time during her therapy sessions and while at school. We went over several medication options. Some sounded scary. We asked a lot about how long the medication stayed in her system and if she had to take them over a long period of time to show affects. We agreed that Bianca could use a little slowing down, especially at night, but at the same time we didn’t want to lose the Bianca we knew. We didn’t want her personality to be affected. Indeed Bianca is energetic and hyper to a degree, but she is also funny and happy. We didn’t want to lose what we felt was her essence.

After discussing our options we settled on a medication, Guanfacine. We tried it out and right away we noticed that Bianca was less frantic. She slowed down quite a bit. As a matter of fact she even started to take naps for the first time since she was 6 months old. But then she started taking several naps. She would fight everywhere we went to stay awake. She would fall asleep at home, in the car, on the bus to school and even at school during class. We stopped giving her the medication. We wanted a kid, not a zombie.

So we discussed another option with our doctor and gave it a shot, Adderall. This medication appeared to do very little. Bianca seemed like the same person she had always been. Teachers didn’t really notice any improvement in attention span or anything but at least it didn’t make her a zombie. We tried a different form of the same medication, Adderall XR to see if it made a difference but we got the same results. Bianca didn’t show any effects of being on any medication whatsoever.

One thing we did do however was explain to the doctor that we were near the breaking point of complete and utter sleep deprivation. There had not been a night in which either my wife or I had more than a few hours of sleep in a row. The doctor recommended that we try Clonidine. We tried it the first night and within about a half hour Bianca was out. It was just what we needed. If the entire family is exhausted, everybody suffers. We suddenly rediscovered energy to go to the park and actually play with the kids throughout the day without it all being a blur.

We gave Bianca her Clonidine every night, and a half hour later she would be out. But in time, she started to wake up in the middle of the night, usually after 5 hours of solid sleep.  Now she was up at 3AM and she was REALLY well rested. We countered by getting Bianca to go to bed on her own, and then when she would wake up in the middle of the night, we would give her the medication.

That worked great and had an unexpected result. Over time, she stopped waking up. She just slept through the night. On top of that, she was now sleeping through the night in her own room… AND would sometimes tell us she was sleepy, or if we saw her acting tired and asked her if she wanted to go “night-night” she would walk over to the baby gate, wait for us to open it and then walk up to her room on her own and get into bed. She even started saying “good-night” and “I love you” while in bed.

Nowadays Bianca waking up in the middle of the night is by far the exception rather than the rule. Sometimes she stirs awake, but she loves being in her bed and buried under every possible cover so much that she usually just lays there and sings herself back to sleep. If not, occasionally we give her Clonidine but it has become increasingly rare. The defenses are still up though, so even if she does wake up and stays in her bed, Clonidine or not… I am wide awake waiting for her to want to go downstairs and play.

After months of Bianca not being on any meds other than the occasional Clonidine we had another follow-up with Bianca’s specialist. This time he suggested we go another route with the meds because Bianca was a little bit bigger and it might help her out. Reluctantly I agreed and Bianca was prescribed Ritalin.

We took forever to fill the prescription. Once we did, we still didn’t give it to her for a long time. We finally gave it to her last week… once. I can’t say that I noticed any difference in Bianca. I did notice however that my mind was in a battle. All this time I had been going along with what the doctor had been telling me about medication because it made logical sense to me; Get Bianca to settle down some and she should be able to concentrate more and get the most out of her therapies. That seems reasonable. I am a man that places a great deal of faith in science. There comes a time though when you have to play on a hunch. What my gut had been telling me for a couple of years, but that I was afraid to really vocalize is that I am not certain that BIANCA needs medication. This isn’t every child with autism, I am talking about Bianca and where she sits on a spectrum of a brain disorder that is so vast that her challenges and quirks are shared by not one other person.

Without medication, Bianca has expanded her speech to a degree I would have never thought possible in one year. She can now sit at a desk for a considerable length of time. Bianca sits with us at a restaurant and doesn’t try to run every second. She still tries to run on occasion, but it is far different. Bianca has made HUGE improvements without medication. Had she been on medication and made these great strides, what would I have been thinking? It was the medicine.

There is an interesting thing that my reading of so many blogs, stories and articles on autism and medication has turned up and I feel that most parents are probably not aware of this fact…

Most medicines used on children, were never tested on children.

Check out this statement from Dr. Dianne Murphy M.D.,Director of the FDA’s Office of Pediatric Therapeutics, “…many therapies are developed for adults and then used in children without having been studied in children. Therefore, most marketed products that are mostly used in adults have not been studied in children—even though they may be used by doctors to treat children.”

In other words, whenever a child uses a medication that was initially developed for adults, the theory they are working on is, “It works in big people… it must work in little people too”. Where the medical community can test these medicines on kids strangely enough, is in the real world. They look at the data from kids taking the medication meant for adults, but administered in smaller doses and draw conclusions based off of what are essentially field studies.

Shocking? I think so. Understandable? Yeah. I get it. I am not anti-medicine or anything. I just think that it is important that we as parents understand this concept.

I understand that there are kids out there that NEED to be medicated for various reasons. I am also perfectly aware that as parents, we put ourselves under an incredible amount of pressure to do the right thing for our kids. We second and third guess every single decision we make and we live with endless guilt and fear that maybe we made the wrong choice. When you have a kid with special needs you come across so many forks in the road that Garmin couldn’t get you to your destination.

What is vital and important is that you educate yourself about your options. You know your child best. Sometimes the best course of action is inaction. That is how I truly feel about medication when it comes to my daughter. That doesn’t mean it is right. It doesn’t mean that it is right for you or your loved one. It is just right for me and my daughter. And after a lot of thought and debate, I feel pretty comfortable with that decision.

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  1. We too struggled with the medication decision for years, and once we decided to try it we had lots of difficulties. First med made him an insomniac, second one made his ADHD worse. Third is better, though don't know if we're really seeing improvement or just back to where we were. If this doesn't work, I think we're done with meds for now.

    There is no right answer, and there are no magic pills. Each family must weigh the decision carefully and make the choice that works for them.

    As far as the night-time waking goes -- have you tried a weighted blanket? We got that suggestion from Jess (Diary of a Mom) and it has worked wonders. Well worth the expense. He gets up far, far less during the night now.

  2. "When you have a kid with special needs you come across so many forks in the road that Garmin couldn’t get you to your destination"

    Best line ever!

    love your take on the medication route... it is definately a stuggle of the mind which is wrong/right!

  3. Lou, I also have a child, about the same age as Bianca, who is ASD and ADHD combined. Sometimes I feel like I am the only one in the world with this combined diagnosis. My son never stops moving. I am going back and forth and back and forth right now about medication. Psychiatrist, Neurologist, and therapists all say give it a go. he has a one on one aide for Kindergarten, but for first grade, he will either need medication, or probably end up in a special ed classroom. I've been following you and Bianca since she was about 2, without even realizing it was you. I think I saw the video years ago that you did for Autism SPeaks... Small world.