Christmas Eve was the fourth anniversary of our decision to take O off of meds. Although we all gave a lot of thought to the decision – and although we have revisited the decision multiple times over the ensuing years, as O’s tics have worsened – in the end it was not a difficult decision to make.
For most of O’s life, our primary challenge has been his off-the-charts ADHD. The toddler stage, during which a parent feels as if he or she cannot leave the child unsupervised for even a moment, lasted well into the “big boys” clothing sizes at our house.
I once left the room for about a minute when O was 8. When I left the room, he was seated, quietly engaged in some schoolwork. I returned a minute later, and he was gone; I found him three houses away, following a butterfly that he had noticed out of the corner of his eye.
We had tried the traditional ADHD meds, and the results were disastrous. O, already a scrawny child, had quit eating altogether. We also got to see first-hand why some of these meds have black-box warnings. This was a particularly brutal, unpleasant period.
After O had been diagnosed with TS, we tried meds again. Strattera worked immediately. For the first time in his life, O was able to interpret the basic signals his body sent his brain: hunger, thirst, fatigue, full bladder.
We had spent years just trying to get O to eat; he would not realize that he was hungry, he would be distracted by something far more interesting than his PB&J, and eventually hunger would lead to a gigantic meltdown – followed by a continued refusal to eat and a seemingly endless perpetuation of the cycle.
So, that was great. O began to eat and drink regularly. He would actually tell us that he was tired, although he continued to be unable to fall asleep. There was a noticeable ability to focus and complete schoolwork.
But the meltdowns continued, so another drug was added. Meltdowns decreased, but O became more lethargic, and his creativity and mental energy took a hit. Sleep still was not happening – by this time, we had realized that nothing triggered an explosion like a lack of sleep. We added melatonin, and, at last, O was able to fall asleep. So life was relatively smooth – for a while.
We began to realize that O was expressing anxieties and obsessions that we never had noticed before. The light switches in our house always had to be pointing in the same direction.
If O’s brother, who had a nasty case of “cleat feet,” entered O’s room, O would come completely unglued. The sight of someone carrying a cup from a fast-food restaurant would spark a screaming fit. All of a sudden, O had a diagnosis of OCD, and we began trying a series of meds intended to treat the OCD.
And thus we learned something funny: The ADHD meds made O’s OCD worse. The meds O was given for the OCD made his ADHD much worse. None of the meds helped his tics. Some of the meds made O wildly unstable – not our goal! After two years of medication, we were spending several hundred dollars per month on prescriptions that seemed to do little more than counteract each other.
Taking a closer look at the possible side-effects each medication could produce, we noted that O was experiencing nearly all of the side-effects, with steadily decreasing benefits. So we began to wean O off of meds.
On Christmas Eve, 2007, we took O to see the one neurologist (out of at least half a dozen) who has been even remotely helpful and sympathetic. Dr. B thought O was an extremely interesting kid; he also thought O was unlikely to experience any benefit from medication, and told us to go ahead and discontinue the rest of O’s meds. So we did.
And guess what happened? We got our son back. When we took O off all meds, we discovered that the meltdowns were gone; what had been a daily occurrence now happened about once per month.
O generally was far more stable than he had been. OCD symptoms were there, but they were manageable instead of holding all of us captive. The ADHD still is there, but now O has some motivation to work to overcome it. The tics have worsened steadily – but none of the medication had any effect on O’s tics, anyway.
I think the meds initially did what they were intended to do. Without them, who knows when or if O would have learned to interpret those hunger and fatigue signals. But after about 18 months on medication, the side-effects outweighed the benefits, and it was time to quit.
As O’s tics worsened, we would revisit the question of meds. Each time, O was involved in the decision. Each time, O researched the drugs in question, and each time he announced that he never would be in enough pain to make him want to resume medication. We respect his decision.
How is everything going? Would love an update!
Yes, it is hard to know if something new actually is helping or if the latest change in meds/ diet/ lifestyle just happens to coincide with a waning of tics. We now have a pretty good idea of what some triggers are, when to expect worsening tics, and how to help mitigate tics, but O now is fifteen and we have been working hard to untangle his issues for twelve years, easily.
Everyone is different, and I am not a doctor, but I would say that we have had the most success, again, with swimming to manage tics (and ADHD, to some extent). I think an activity like swimming can be excellent for a child with sensory issues. We have tried yoga and meditation, but O is way too distractible for those activities — they might well be worth a try for other, though.
We also tried martial arts, and O had a lot of success there, until it turned out that his tics actually were at their worst at tae kwon do. O’s tics look a lot like violent epileptic seizures, so going to tae kwon do meant I had to be ready to wrestle and restrain him if he had an attack. He now is bigger than I am, so that is easier said than done (and we no longer go to tae kwon do). We still are not sure if the trigger was the noise from students yelling while doing their drills or if it was the frequent shifting from being very focused to being unfocused.
A now-obvious trigger, for us, is allergies. O’s tics can be debilitating in spring and fall, but in summer and winter he just looks fidgety to most people. He is busy researching histamine reactions to see if he can figure out anything.
We homeschool, as I’ve noted before, so I have not had to deal with schools pressuring me into medicating my child. I am not sure how I would react to such pressure. I know I responded poorly when O was in preschool and his teachers complained to me that I just did not know *how hard* it was to have him in class for three hours each day.
Due to O’s age, we involve him in all medication decisions and discussions. He will be on his own (um, we hope) in a few years, and he needs to learn to deal with doctors, advocate for himself and manage his own medical care. We reserve the right to override his decision in extreme situations (i.e., if tic attacks result in broken bones, concussions or loss of consciousness), but until then, he researches the medications and weighs potential side-effects against the pain and inconvenience he is experiencing, and decides for himself what he needs.
This was a super helpful post for me. After visiting a big UCLA doc Nov. 1 to consider meds for Stink’s ADHD, he never called back with a f/u. I feel it’s a blessing in a way. I don’t really want to go that route right now. Your info is just more confirmation. Of course, every kid is different – I’m still open to meds! But I’m also not freaking out over the fact that I’m NOT doing it. Thank you.
Thank you so much for sharing your story. It’s so hard, especially when symptoms wax and wane, to know if what we try with our kids (medical or natural) works! Your story is very interesting because it shows that the solution one day is the problem the next. I will remember this and always reevaluate our situation.
We made the decision to take Ally off her tic meds (catapres) in Sept 2011. The neuro suggested we take her off to see what level her tics were at. Originally I didn’t want to put her on the meds but the school she was attending was pushing me into it. They were calling me almost every day. Several times they told me to come pick her up. So I was very hesitant at first because she had just started at a new school and didn’t know how they would react if her tics were the same as before the meds. For the first 2 months her tics started to increase but the new schools reaction to them was VERY DIFFERENT. They have been so understanding and supportive that her anxiety in school is so low that her tics have decreased. So now we are 5 months in and her tics are actually very mild. She is still on zoloft for her OCD but she is now attending the Anxiety Clinic at Rutgers so our hope is to take her off that in the near future. I’m in no way against using meds. If her tics were to increase to the point of interfering with her life then I would not hesitate to start them again.