Dear readers: The following is a redacted copy of a letter I wrote detailing an especially frustrating appointment in the not-too-distant past with a medical professional. Some days I feel as if I could fill a book with stories such as these. This particular visit seemed to me to be appropriate to share now, in light of the story out of New York that is making national news.
This appointment constituted the last straw, as it were. My husband and I spent more than 10 years hauling O to specialist after specialist, seeking first a diagnosis and then a treatment that might do more good than harm.
The tics have not dissipated; the ADHD has not dissipated; the “attacks” or seizures still plague O, as do the migraines, but we have given up on finding a doctor who is able and willing to help O.
It makes me sad as well as frustrated to say that, but it has become quite clear to us that it is more productive to help O learn to manage himself and these “attacks” when they happen. Here is the letter:
We went to see Dr. X because O has had a severe headache for the past month. We have noted that O’s tics are much worse at times when he has headaches. We were not seeking a TS diagnosis – O was diagnosed by Cathy Budman in 2005.
I provided Dr. X with a one-page summary that included O’s diagnosis, past medications he has used, our current concerns, basic background information. Dr. X set it aside and did not read it.
Dr. X asked O about his tics. O does not like to discuss his tic attacks because talking about them makes them worse. O had an attack, and Dr. X turned to me, smirked, and said that O does not have TS. He said that O was having “pseudo tics,” that they are completely voluntary, and that I should ignore O when he has these attacks.
Please bear in mind that these attacks (which are in addition to O’s several dozen regular motor and vocal tics) have been occurring and intensifying over the last two years, and they include one movement which obstructs O’s airway and another which causes him to lose control of his legs and flail on the floor as if he is having a seizure.
Dr. X then began questioning O about his mental state: Does he have friends? Does he ever have fun? Does he like himself? Is he generally depressed? O and I both were confused by this line of questioning.
I asked Dr. X if he was suggesting that O is faking his attacks, and he said that O might not know that he is faking it, but – yes. He then attributed the tics to O’s “deep-seated psychological issues.” This phrase, “deep-seated psychological issues,” was used repeatedly during the appointment.
Dr. X announced that O has severe OCD, and that it was the cause of all of his problems. O and I both contested this diagnosis. I observed that we consider O’s OCD to be mild, as it is the least of his issues, his symptoms are far milder than his brother’s, and they pale in comparison to what they were a few years ago, when we often could not leave the house.
O noted that “It’s not as if my need to have the light switches lined up ever has made us late for anything” – unlike his tendency to misplace his shoes every day. Dr. X, however, remained steadfast in his opinion. A cursory five-minute neurological exam followed.
We then were told that O needs to be placed on SSRIs and to be in counseling sessions several times per week. Again, I had to strenuously disagree with this opinion. I then was informed that O’s “attacks” are intentional, because he “has not been getting the attention that he needs” – this included a pointed glare in my direction.
Please note that I have homeschooled O for the last nine years, in addition to: taking him to doctors all over the country; researching and advocating endlessly; working with him on anger management social skills and attention; giving up my own career and sacrificing my own health; supervising him at all times.
The SSRIs, we were told, were necessary because O has “LOTS and LOTS of problems.” We noted that O’s distractibility, which already is severe, became unmanageable when on SSRIs. Dr. X informed us that that was only one SSRI, and until we had tried all of them, we could not say that they make things worse. We also were told that all of O’s problems are rooted in his debilitating OCD.
His distractibility? — that’s OCD. When I said that ADHD was blindingly obvious to everyone who has met O, I was told that ADHD really is OCD, that it’s really all the same thing; O has so many trains of thought running through his head because he has OCD – not because he has an IQ well over —.
O does have tics, sure, we can say that, Dr. X said, but they really are just his OCD. The fact that the tics are worse when O is hungry or fatigued also actually is OCD. I think Dr. X might be obsessed with OCD.
O does not want to resume SSRIs. We have been telling him that he needs to begin advocating for himself, so he tried to discuss how the chemical structures of SSRIs are virtually identical to each other. That earned O a glare and an Asperger’s diagnosis, although O no longer meets any of the clinical requirements for AS.
I tried to redirect the doctor to the reason why we were there, specifically O’s month-long headache and the observed correlation with an increase in his tics. Dr. X told us that O is obsessed with pain and how he feels, that his headaches are just his OCD, and that O has “delusions” of pain.
I argued with this, since as someone who has had migraines for over thirty years, I am confident that the pain is real. To this, Dr. X asked, “So, why are you even here? Are you just wanting pain medication??” I do not see why it is wrong, bad or suspect to want relief from over a month of pain, and I do not understand the tone of disgust in Dr. X’s voice.
We walked out of the appointment when it became clear that Dr. X was not interested in hearing our concerns or in having any input from us into O’s treatment. He refused to look at video of O’s tics, and he scoffed at the notion that O could be experiencing chronic pain from years of muscle-clenching tics and violent jerking movements.
I am aware of Dr. X’s reputation as an expert in movement disorders. I am mystified by his insistence on focusing on O’s perceived psychological issues, and I am deeply angered by his refusal to even acknowledge that O’s headache is real.
While the odds that O has a severe underlying cause for his headaches are very slim, I find Dr. X’s behavior to be inexcusably negligent. I would not recommend that any parent waste time and money on seeing Dr. X.
It is heartbreaking to hear stories like this. We have been very fortunate to have had a wonderful team of people at school and in the medical profession for our son. Five years ago, on the recommendation of another parent, we started seeing a chiropractic neurologist for our son’s TS. He is now virtually tic free, is doing well in school and no longer has episodes of R.A.G.E. He had been on ADD medication for 3 years prior to seeing this doctor, and is now, happily, off medication and his attention span is greatly improved. All of this is accomplished through chiropractic adjustments and balance and focus exercises. It is definitely a treatment option worth considering.