The Doctor Search

Someone asked me in the comments of a blog post I did on the CABF website how we found a psychiatrist who works well with us – that we feel a partnership with.

It wasn’t easy.

We started when Tim was four, with a neuropsychologist that said – and I quote – “I’d say he’s autistic, but he has excellent eye contact and a good sense of humor,” and then diagnosed him with PDD-NOS. I had the audacity to ask, “how can he have an autism spectrum disorder if he has two traits that disqualify an autism spectrum disorder?” He stood by it. I didn’t know any better to continue questioning it. I figured, he was the doctor, he knew best.

When his behavior got more and more unusual – fleeing school and home, raging seemingly for no reason, extreme agitation – we consulted a child psychologist who, after several sessions, suggested Tim just had learning disabilities. We went through the IEP process and testing at school added a mixed receptive-expressive language disorder and a sensory integration disorder – both of which have symptoms that overlap his existing PDD-NOS diagnosis.

Next we saw the child psychiatrist who suggested Tim had some type of emotional disturbance, and spent sessions berating Tim for his behavior. When Tim didn’t improve – he actually got more violent and agitated – he told us to relinquish our rights to the state – in front of Tim, asking Tim if that’s what he wanted. Tim was hospitalized the first time by this doctor.

Tim’s first hospitalization was a nightmare. The attending psychiatrist talked down to us, medicated Tim into a coma, and refused to talk to us on the phone. We had no idea what to expect from a hospitalization – we called the doctor who told us to relinquish rights and he said that’s the way it works. After Tim was inpatient 25 days, I lost my cool in a staffing and demanded they return me my child that very moment. 25 days, lots of meds, zero change in diagnosis and zero improvement.

It was then that I realized that we couldn’t rely on doctors who lectured us, refused to talk to us, and had to get ourselves educated. We bought books – namely The Bipolar Child and Raising Your Spirited Child. I scoured the internet for hours on end, for weeks in a row, and started printing page after page from Wrightslaw and CABF. I read the DSM-IV descriptions of what Tim had already been diagnosed with. I brought questions to our psychiatrist. Could it be biploar? Could it be something else? I was dismissed. What could I know? I was just a parent, not a doctor.

Tim’s second hospitalization was at a different hospital than the first – we didn’t want to get that attending again. The psychiatrist assigned to Tim did nothing more than ask Tim what his feelings were, and tell us Tim just needed to understand his feelings. We saw her a few times outpatient after that where she continued to ask Tim about his feelings. When he said he wanted to kill himself, her response to us was to say that Tim was REALLY sad. No shit.

I realized – this doctor was never going to help us. She was never going to listen to Tim or to me. She had very little experience with psychotic kids. I needed to take charge, and start looking for a doctor who not only had experience with kids like Tim, would listen to my diary of his behavior and my thoughts about what was going on with Tim. I opened up the doctor directory from our insurance company and started making calls.

We tried a few more psychiatrists, never having more than two or three appointments with them because they had the same affiction – the inability to talk TO us instead of AT us. After about three we found one that seemed promising, but only got one appointment in when literally on the way to the second, Tim had a major psychotic episode and landed back in the hospital. Same hospital as the last time, so the doctor we’d just fired was assigned to Tim. I refused. I said there was no way I would let that doctor treat my child, and demanded to talk to the head of the department of child psychology. I was told he wasn’t taking patients and didn’t talk to parents of non-patients. I said they’d have to transfer my kid to another hospital unless I was able to talk to him.

He called that night. I told him of our history with doctors, and my new-found attitude that doctors need to work with me, not treat me like an idiot. I needed a doctor who returned phone calls and kept us in the loop while Tim was inpatient. A doctor that invited us to staffings, not dreaded us attending. A doctor that was willing to bring in other doctors and specialists if he or she didn’t have all the answers. I talked for a long time. And he listened. And he said the magical phrase that let me know he was THE one:

I can’t treat him without cooperation and input from you.

He took Tim on during that inpatient stay, and stayed with us. He called us daily while Tim was in the hospital. At outpatient visits, he wanted to hear our diary of how home had been since the last appointment. He interacted with the IEP team. He asked what I thought. He listened to my suggestions and ideas. He freely consulted other specialists when he needed to. He helped us keep Tim out of the hospital more than he thought he needed to be admitted. He advocated for us to get Tim the ICG grant to get him residential treatment. He argued with our insurance company without me even asking him to when things weren’t covered.

It took nine years to find the right doctor. A rough nine years. A lot of those years was my blind faith that doctors had our best interest at heart, and were current on all the research and medications. I had to get pretty agitated to start doing my own research and realizing that doctors are simply service providers. If a doctor doesn’t listen to you and have dialogue with you – find one who does. Now, I know that’s easy to say in a city like Chicago. Doctors abound here. But I believe you’re better served driving a ways once a month to a doctor who works with you than going weekly to a doctor that treats you like a knob.


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