Wednesday, January 11, 2012

Our Medication Issue

I don't know how many of you have children with Asperger's or other special needs, but my 10 year old son has a variety of letters behind his names, including Asperger's. Lately, we have been having trouble with some of the medicine he takes. I wondered how many other kids take medicine for their co-morbid disorders, as there is really no medicine specifically for Asperger's.

Last year, when Ethan was in 3rd grade, he had a great year. The year had started off rough, not due to him, but situations at school. But as the year went on, he progressed so much and really surprised everyone with how well he was doing. He even ended the year with all A's on his report card...that's a great big deal for him!

This year, well, it hasn't been so good. He grew several inches over the summer, gained more weight and despite being healthy, all of these gains really upset the balance of the way his body metabolizes his medicine. After talking to his teachers, his tutor and our pediatrician, we decided that he had simply outgrown the dosage amount of his ADHD medicine. Unfortunately, the pediatrician could not write a higher dosage. Our only option was to completely switch to a new medicine. This is a very scary process, and if you've ever been through it, you know that it isn't easy.

Ethan has what I would consider severe ADHD, but in working with our pediatrician for 6+ years, I know exactly what signs the doctor looks for in knowing whether or not a medicine is going to help. We started at the lowest dose, and I had instructions for how to advance the dosage amount in the proper number of days. Immediately, we knew the lowest dosage was not enough. After a number of days, we increased the medicine and felt like that was the right amount. But it was nowhere near the calming effect that his old medicine had.

He seemed on edge, worried, anxious, and angry all the time. As the weeks, and now months have passed, these side effects have only gotten worse. Over Winter Break, he was at his most extreme of behaviors. He would throw things out of frustration, hit his brother, and tell us (the parents) NO!" When he got back to school, his behavior became even worse, if you can believe if he wasn't even himself. He would refuse to do what the teacher asked him to do..even something simple like read a passage in a book. The tutoring he has 4 days a week was another task that he would refuse to do. It didn't matter to him that this was something to help him, or that it was in his IEP that he had to go. Whatever he was asked to do, the answer was no.

Again, I talked to his teachers, the tutor and decided that this had to change. My turning point was one day in the car ride home, when he was frustrated that I was asking him questions. He got so upset and started banging his head against the side of the car interior saying he just didn't want to be here anymore, that he just wished he was dead. I immediately called the pediatrician.

We have since gone back to his older medication along with a short term addition until my next conference. Already, I can see that he is more like himself...not that angry, hateful child that he was (and that's a really harsh thing to say about your child, but it is true!). Although his patience is still short, he is much more willing to comply when asked to do things. There is still an anger inside, but he recognizes it and tries to get out of a situation before it escalates.

Has anyone else ever been through these types of medicine changes? Does anyone else have a child that has changed so much just from medication? I would love to hear your stories!


  1. Dear Meredith,
    How your story takes me back! I can completely identify with medication issues. When our son,Chris, was on medication for ADHD, his pediatrician wanted us to refrain from giving him his Ritalin during the weekends, on holidays, and over the summer. But our family’s quality of life was as important to us as his performance at school. I couldn’t understand why the doctor would prescribe medication for his disorder for part of his days. If he needed it, he needed it.

    In high school, Chris got identified with schizoaffective disorder (a hybrid of schizophrenia and psychosis). When he had a psychotic episode, he was out of touch from reality. Thankfully, medication brought him back. Medication helped him finish the school year on time – no small feat since he was taking four AP (college level) courses. He even went away to college and completed his degree at Penn State while marching in their Blue Band. Like your son, Chris has multiple diagnoses: ADHD, mental illness, psyoriatic arthritis, in addition to his two severely herniated discs in his back (which ultimately required surgery).

    Needless to say, we’ve learned quite a bit about medication. We were fortunate enough to have a brilliant neuropsychiatrist caring for our son. We learned what you also discovered with Ethen. If medication that had been working suddenly becomes ineffective, abandoning it altogether might not be the best thing. Supplementing it slightly with something else may be all that’s needed. On several occasions the neuropsychiatrist had to tweak Chris’s medication.

    We also learned how diet can impact Chris’s emotions and behavior. Most people focus on sugar, when in fact caffeine, dye, and carbohydrates can interfere with mood and actions. We limited Chris’s intake of those.

    Whenever Chis had to change medication, it was a stressful time. We hoped the change would be smooth and helpful. We found out that certain medications take a while to reach their full therapeutic levels. So, it was important to ask how long it would take for the medication to be fully effective.

    A note about how your son seemed worried, on edge, anxious, and angry. It sounds like that was caused by the change in medication. Having been in special education for over 34 yrs., I know that those symptoms of disorders can be compounded by the child dealing with his conditions. When our son was going through turbulent times, I kept telling myself that Chris had to work harder than others to pay attention and be organized. I was able to have more compassion (rather than sheer frustration!) by imagining him trying extra hard to comply and then face adult reactions implying he wasn’t trying at all.

    Be encouraged. I’m still standing! You, too, will get through this. It sounds like you’re a very proactive and caring mom.

    1. Oh Vicki, how your words comfort me and at just the right time! We just went to our psychologist yesterday and she felt that either the change of medication or as a side effect of the ADHD medicine he was on, that it was causing some sort of a manic period. She mentioned mania, possible schizo-type behavior. But she strongly felt like it is possibly a side effect and that we should watch and wait. He had told her about "visions" and about the hamster that lives in his head...but the way he described it to her, she felt that he was trying to mirror situations that he wanted to happen. Watch and wait is really hard as a mom! We do not have a psychiatrist, and he's never been to a neurologist for anything, but I guess that may be in his future. But thanks again, for all your words. I need all the encouragement I can get!