Monday, June 11, 2012

The Medication Dilemma

I really believe medication has helped my son. Like ALL parents in our situation, we struggled with the decision to medicate. No one – NO ONE – likes giving their child medication, especially something that you know is a stimulant. We had sought a diagnosis after a school year that had grown progressively rougher. Homework, in second grade no less, was a nightmare. Whole evenings were given up to it and they were unpleasant for all involved. There was an incident at school where Dylan crawled under a desk and wouldn’t come out because he didn’t want to do the assignment. Nothing about his relationship to school felt right.

Even without school and homework, Dylan was a tyrant. It literally felt as though there was NOTHING we could say to him that would elicit a positive response. Everything was fodder for an argument and a meltdown. I began to dread evenings. Something was definitely not right.

Dylan struggled with friendships. He had a hard time keeping friends and those he had, he bossed around until they didn’t want to be around him anymore. Every slight was a cruel blow to his feelings, according to him. He couldn’t handle anything that didn’t go just exactly to his idea of it, and his ideas were extreme. This didn’t seem like typical behavior.

Even with all that, even after the diagnosis, we weren’t convinced about medication. But after a particularly rough evening of yelling and angst (on both sides), RockStar turned to me and said “When is he going on medication?”

I do not regret starting meds.

Since then, we’ve tried several, which is not uncommon. His first medication wasn’t even a pill; it was a patch. I don’t remember the dosage he started on, but I think he got up to about 30mg on the Daytrana patch. It worked adequately, but not great. We saw improvement, especially in behavior, but not enough in school attention. After about six months, we tried Metadate CD.
The first month or so on Metadate was heaven. Heaven! Homework would be done when we picked him up at school. He was focused and a pleasure to be around. We thought we had found nirvana!

I don’t know what happened, but the super effects of the Metadate began to taper off. Homework wasn’t getting done at school. His teacher reported he was less focused in class and the teacher wasn’t sure what he was retaining and what he wasn’t. Weekends, when we didn’t use medication, were even worse. Major meltdowns over trivial stuff. We began medicating on the weekends, but there still seemed to be a gap – a difference between what we had seen was possible and what we were experiencing. There were lots of battles over homework, questionable grades, and frustration from teachers. We briefly switched to Vyvanse, but the rebound from it was awful so we went right back to Metadate. We thought about upping the dose or trying something new, but since the school year was almost over, we held off.

That was the first summer of the medication vacation.

It really was a great vacation. Arguments lessened considerably. He actually began eating lunch again. Of course, there was no schoolwork and no homework, save for a summertime school project, which lessened the stress. It was very relaxing.

When school reopened, the meds restarted. He was still on 30mg of Metadate CD, but it soon became apparent that it wasn’t doing much. He was doing horribly in school right off the bat. We had a meeting with the teachers and they thought he wasn’t even on meds!

So we increased it to 40mg. We saw improvement…but again, that heavenly nirvana experience was elusive. We considered trying Concerta and even got a prescription, but he wouldn’t/couldn’t swallow the pill. Homework remained a struggle and grades were uneven. Dylan went into the holiday break with Cs and a D on his report card.

Understandably, we were losing faith in Metadate. After speaking with his pediatrician, we decided to try Focalin after the school break. The doctor put him on 30 mg and to this day, I’m not sure it was the right dose. I think the doctor wanted to start with a lower dose and work up if needed.

It was like he had no medication at all. We tried to stick it out, but I was getting angry notes from the teachers about work not getting done. Homework was even more of a nightmare. We could have tried upping it, but we went back to what now felt like home base – the Metadate. While it wasn’t nirvana and it looked like it never would be nirvana, it at least seemed to have some effect.

By this point, I had read a lot about ADHD and executive function deficits. It was very apparent that Dylan had working memory issues, something that had first been pointed out by a tutor. I tried to get the school to approve him for pscyhoeducational testing to see just what we might be dealing with, but their opinion was that he wasn’t failing so they wouldn’t send him for testing.
Meeting with the Student Assistant Team always – and I do mean always – ended up with them recommending we try different medications or different dosages. Yes, I’m aware that they are definitely not supposed to do that, but anyone who has been the sole parent in one of those meetings surrounded by 8-10 teachers, administrators, social workers, etc. At the same time, I was becoming frustrated by the meds. There were definite side effects.

When Dylan was first on meds, probably for the first nine months, sleep was a major issue. Like many, we turned to melatonin, which really was a Godsend, but it was treating drug issues with drugs. It felt like we were having him take his uppers in the morning and his downers at night.

Eating was a huge problem since Dylan had never been a big eater. I would read recommendations on blogs and message boards to get more calories in him, but few if any were helpful for Dylan himself. Always picky, he started passing on foods he once liked – foods that might help keep his weight up and provide him with appropriate nutrients to help him in school. Eggs were one. I would gladly have made him eggs every morning, any way he liked, but suddenly, he didn’t like eggs anymore. Peanut butter and jam were once a staple until suddenly, he didn’t like that either. I felt as though his food list was getting shorter and shorter.

The only time he was really hungry was when he first got home from school. Blogs and articles suggested having dinner right away, no matter how early it was, but if we did that, homework never got done. So I would make a big snack, so big it was almost a small meal in bite-sized pieces. I tried to get protein in there, but cheese was the only reliable protein I could get him to eat. (Even when he was “starving,” he would be picky. He would also be terribly grouchy when he was hungry and it wasn’t worth fighting over food.

As challenging as the sleep and eating issues were, the picking habits were worse. Most of the time on meds, Dylan would pick at his fingers and toes. This is really a normal habit for him, just worsened by the meds. It’s not uncommon to see him chewing on his toenails. Yes, you read that right. I think he must be double-jointed to be able to do it.

During the worst spells of it, he would worry a bug bite or some other blemish anywhere on his body. A small crack on his lip would become a huge scab in a day. To my complete horror, he would pick his nose anywhere, anytime, to the point of bleeding. The negative social aspect of it bothered him, but it was like a compulsion and he couldn’t stop.

The only upside was that these spells came and went. I think they were related somewhat to anxiety.

By the end of the school year, largely at the urging of the school, we had increased meds to 50 mg, but we weren’t seeing a huge improvement. When we made the switch, I asked his teachers what they saw, but they were vague. This is an emailed comment from his main teacher. Keep in mind that she is a native French speaker:
Dylan has been more focus and getting more done during the day because I have had more individual time with him this quarter and especially this last week….I personnally do not feel that he is more focused on his own
We had also added a “bump dose,” again at the urging of the school, of 5mg of Ritalin. Because we work, the school nurse had to give it to him and the most convenient time (to correspond to when other kids get their bump doses) was at around 1:00pm. It really did nothing to help with homework which was as miserable as ever for everyone involved.

Dylan ended the school year with almost straight Cs. Not horrible, not wonderful. Not, honestly, a reflection of his intelligence or intellectual curiosity.

This summer, I was both anxious and excited about the prospect of taking another medication vacation. Would it be successful? Would he react the same way?

So here we are, three weeks into the summer and three weeks into this latest medication vacation. And it has been wonderful! We’ve had very few arguments and very few meltdowns. When we do have them, they are pretty short lived and manageable. Dylan’s disposition seems to be sunnier.

The only exception has been during testing, when the psychologist specifically asked us to have him on meds. The difference was startling. He seemed so … ambivalent. Unenthusiastic. I asked him about it, about how he felt when he was on the meds and he used the word “gloomy.”

I could easily fall into terrible guilt over this. But I don’t think any of us could have recognized the difference, which came on so slowly. And looking back at how we started and where we were, I don’t think I would have made a different decision.

But at this moment, we are not sure where we are going.

I don’t have any illusions. I know that if Dylan suddenly had school and homework, we would battle over it. He wouldn’t want to do it. He would struggle with it. In fact, I have a bit of a learning program for him for the summer (basically to make up for the things I think he missed this year) and he has pushed back against that.

Would he do worse in school off meds? My guess is that he would. That while the meds certainly didn’t (and really couldn’t) make up for his executive function deficits, they do provide some measure of attention and focus, even if it’s not all of what he needs.

Should we, could we try a different med? Even at age 10, Dylan is still not easily swallowing pills, which narrows our selection significantly. We’ve already tried most if not all of the capsule pills that we can open up.

Of course there’s a range of non-pharmaceutical options, such as homeschooling and neurofeedback, neither of which we can remotely afford. I don’t know of a local private school that specializes in ADHD and even if there were one, we couldn’t afford that, either.

Right now, we have more questions than answers.We await the results of the testing which I hope will give us tools to use, even if it doesn’t point us in a straight line to the path we should follow.

And we have the prospect of an upbeat, relatively gloom-free summer without the pressure of school-based homework. I’ll take it!

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