They are the professionals but you are the expert…
About eight months ago, I posted on David’s medication changing again. This is an update to that post. At that time we were switching David to Methylin ER, a generic six-hour medication that was to deliver a level, longer acting effect and reduce the occurrence of rebound. It did, in fact, deliver a level, longer acting effect and reduced the occurrence of rebound. It was cheap and always in stock. It also produced a deleterious side effect that quickly escalated to alarming.
David began to have movement issues. I don’t know how to describe it. He called it shifty. “I feel shifty” he would say. While seated he would half stand up and down, not just once or twice but over and over. To look at him, one would think his tail bone was itching and he was using the chair back to scratch it. While trying to settle down for sleep in his bed, his legs would move and move and move. He could not lie still.
I have a friend with a son who was treated for ADHD and ended up with Tourettes Syndrome as a result of medication . My cause for concern was huge. I researched Tourettes, Restless Leg Syndrome and tics. The shifty symptom had presented itself with the introduction of the Methylin ER. However, the picture was complicated by the fact that we had increased his dose of Paxil and Trazodone at the same time. It was extremely difficult to determine which factor might be responsible for the new side effect.
During the course of my Internet research I came across a forum of ADHD medication users. The discussion centered on the difference between generic and brand Ritlin. For the most part, this group of people espoused the superiority of the brand Ritalin over the generic, with the brand delivering a much “cleaner” effect than the generic.
Highly intrigued, I took the question to the prescribing doctor of David’s meds, who is a psychiatrist. The doctor said that there is no difference between the brand and the generic except the price. The active ingredient is the same. Next, I took the question to the pharmacist that dispenses David’s meds. The pharmacist said that there is no difference between the two except the price. The active ingredient is the same. The question was now changing to who do I believe, the professionals or the people who actually use the medication?
The prescribing doctor and I kept David on the Methylin ER for another month. In the meantime, we also saw David’s therapist and I posed the generic vs. brand question to her. Her response was immediate and sincere.
“Oh, yes, there is a big difference.”
“You know this because of people that you personally know?” I asked.
The next question was for David himself. I asked him that if he had to choose, would he choose shiftiness or rebound. His response was immediate.
That was it for me. I decided that we had nothing to lose by making a change. At this point, the doc was suggesting yet another medication to treat the restless leg syndrome. I was determined that David was not going to take on a fourth medication, especially to treat a side effect! I put all my research together and formulated the plan.
First, he would switch to brand Ritalin in the dose that I had determined would be a pill splitting dose (a lot of the forum people talked about this factor.) We would go back to “designer dosing” and only use the short-acting brand Ritalin when he needed it, which is usually only mornings.
Second, he would take the Paxil at night instead of the morning and we would dump the Trazodone all together.
Two meds, not four!
Within a month, the shiftiness had greatly diminished and I am happy to report that it is completely gone several months later. He is sleeping through the night without the Trazodone. David’s situation is much improved and less medicated. Win-win.
I was once told by a speech therapist that they are the professionals but I am the expert. My oldest daughter had a speech development delay due to chronic ear infections since birth. I had determined a subtle change in my child’s development that was great enough to push her over the line to qualify for services. This was six months after she had been denied services because, while there was indeed a problem, it was not enough of a problem to qualify her for services. During the first appointment, the therapist made the statement “We are the professionals but you are the expert.” I knew my daughter had regressed, had her retested and she was subsequently served. I have never forgotten that statement.
We, the people, patients and parents, ultimately bear the final responsibility for our health and well being, not the doctors. The doctor/patient relationship is a partnership and the balance of power belongs to the patient (or his parents.) The doctor is the employee and I am the boss. The doctor is the professional and I am the expert. The doctor can only do so much and the patient (and his parents) must do their part. And, there is more to treatment than medication. But, that is for another post.