This is the second of a series of posts on Julie Tittler’s experience with an experimental medication for her son’s ADHD.
We can breath! We’ve found a foothold!
In Grasping at Straws, I wrote about how we had tried every class of medication approved by the FDA for use in treating the inattentiveness and executive function deficiencies associated with ADHD. All caused my son such severe side effects that he had to be taken off of them. Fortunately, his psychiatrist, who is one of the top pediatric pharmacopsychiatrists in the world, knew of a medication approved for treating moderate to severe Alzheimer's which has been showing great promise in treating ADHD, bipolar, and autism spectrum disorders in adults, Namenda. She had used it in some severe pediatric cases to great effect and told us it was one of our last avenues of treatment. No clinical studies have been done on its use in pediatric cases. Eeep!
Really we had no choice. We researched. We agonized. We commiserated. I prayed. We gave it a shot. We added it to his drug cocktail and it helped! It wasn’t a panacea at the low doses we added it initially, but it was a marked improvement. It’s been a slow process. We started at the lowest dose, once a day. After a month of that, logging his mood and sleep, and tracking behavior and performance at school, we saw there were no side effects. The doctor had us increase the dosage again to see if we could get better cognitive benefits, as the effect at such a low dose was minimal. We stepped up to the lowest dose twice daily. More benefit, no immediately obvious side-effects. We then doubled the bedtime dose because of a huge growth spurt.
This seemed to be going great. He was behaving better in school. He was performing better academically. He was playing baseball. He had one of the highest on-base-percentages of anyone in the whole league (aided by his propensity to get walked and hit by the ball). His team made it to the finals! They lost in the ninth inning. It was a tough break that caused my son some emotional issues but was a truly valuable life lesson. He would never have been able to perform to such a level in baseball without that magic little pill.
But something wasn’t quite right. Watching him play baseball night after night was illuminating. He moved in his very own personal quagmire. All his movements and swings were like he was submerged in a vat of molasses. He almost never hit it out of the infield. Every movement of his body, from eating to running to swinging the bat, was like watching an instant replay in slow motion. Not lazy movements. Not weak movements. Slow movements. He had also started drooling more, and his speech became very mushy and quieter.
Back to the doctor. She decided that it wasn’t the Namenda. It was overall chemical load in his system slowing him down. We decided to wean him off the one medicine in his cocktail nobody liked, but which had helped his extreme hyperactivity since he was six years old, the guanfacine (a.k.a. Intuniv). It’s a beta-blocker which is used for managing blood pressure in adults, and hyperactivity in children. He’s always had borderline low blood pressure while on this medication. It has always taken away just a little bit of his spark. But, boy! did it work great for his hyperactivity!
It took us two weeks to totally wean him off the guanfacine. There was a big spike in hyperactivity at first, but then that levelled off. Then we added in a bit more of the Namenda to his morning dose. All of a sudden, things changed fairly drastically. My son was back; his spark was back. His movements returned to normal. Drooling, and some facial tics he had, decreased. He picked up a book here and there. (He never picks up books to read!) He started bathing more regularly. Although always very empathetic for a boy his age, he became more so, going out of his way to help his sister and me as necessary. He started watching TV and playing video games much less. He went back to listening to music and dancing and dancing and dancing!
It’s going so well, we and the doctor are thinking of trying to reduce his Abilify in a month or two to see what this little Namenda pill can really do!
We are no longing scrabbling at the cliff edge. We have found our foothold.