Christmas Eve was the fourth anniversary of our decision to take O off of meds.\u00a0 Although we all gave a lot of thought to the decision \u2013 and although we have revisited the decision multiple times over the ensuing years, as O\u2019s tics have worsened \u2013 in the end it was not a difficult decision to make.<\/p>\n
For most of O\u2019s life, our primary challenge has been his off-the-charts ADHD.\u00a0 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 \u201cbig boys\u201d clothing sizes at our house.<\/p>\n
I once left the room for about a minute when O was 8.\u00a0 When I left the room, he was seated, quietly engaged in some schoolwork.\u00a0 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.<\/p>\n
We had tried the traditional ADHD meds, and the results were disastrous.\u00a0 O, already a scrawny child, had quit eating altogether.\u00a0 We also got to see first-hand why some of these meds have black-box warnings.\u00a0 This was a particularly brutal, unpleasant period.<\/p>\n
After O had been diagnosed with TS, we tried meds again.\u00a0 Strattera worked immediately.\u00a0 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.<\/p>\n
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 \u2013 followed by a continued refusal to eat and a seemingly endless perpetuation of the cycle.<\/p>\n
So, that was great.\u00a0 O began to eat and drink regularly.\u00a0 He would actually tell us that he was tired, although he continued to be unable to fall asleep.\u00a0 There was a noticeable ability to focus and complete schoolwork.<\/p>\n
But the meltdowns continued, so another drug was added.\u00a0 Meltdowns decreased, but O became more lethargic, and his creativity and mental energy took a hit.\u00a0 Sleep still was not happening \u2013 by this time, we had realized that nothing triggered an explosion like a lack of sleep.\u00a0 We added melatonin, and, at last, O was able to fall asleep.\u00a0 So life was relatively smooth \u2013 for a while.<\/p>\n
We began to realize that O was expressing anxieties and obsessions that we never had noticed before.\u00a0 The light switches in our house always had to be pointing in the same direction.<\/p>\n
If O\u2019s brother, who had a nasty case of \u201ccleat feet,\u201d entered O\u2019s room, O would come completely unglued.\u00a0 The sight of someone carrying a cup from a fast-food restaurant would spark a screaming fit.\u00a0 All of a sudden, O had a diagnosis of OCD, and we began trying a series of meds intended to treat the OCD.<\/p>\n
And thus we learned something funny:\u00a0 The ADHD meds made O\u2019s OCD worse.\u00a0 The meds O was given for the OCD made his ADHD much worse.\u00a0 None of the meds helped his tics.\u00a0 Some of the meds made O wildly unstable \u2013 not our goal! \u00a0After two years of medication, we were spending several hundred dollars per month on prescriptions that seemed to do little more than counteract each other.<\/p>\n
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.\u00a0 So we began to wean O off of meds.<\/p>\n
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.\u00a0 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\u2019s meds.\u00a0 So we did.<\/p>\n
And guess what happened?\u00a0 We got our son back.\u00a0 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.<\/p>\n
O generally was far more stable than he had been.\u00a0 OCD symptoms were there, but they were manageable instead of holding all of us captive.\u00a0 The ADHD still is there, but now O has some motivation to work to overcome it.\u00a0 The tics have worsened steadily \u2013 but none of the medication had any effect on O\u2019s tics, anyway.<\/p>\n
I think the meds initially did what they were intended to do.\u00a0 Without them, who knows when or if O would have learned to interpret those hunger and fatigue signals.\u00a0 But after about 18 months on medication, the side-effects outweighed the benefits, and it was time to quit.<\/p>\n
As O\u2019s tics worsened, we would revisit the question of meds.\u00a0 Each time, O was involved in the decision.\u00a0 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.\u00a0 We respect his decision.<\/p>\n