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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  • Adrienne April 3, 2010 at 3:38 am

    I couldn't agree more. It took us many years, too, to find a psychiatrist who understands that we are working together, parents and healthcare providers, in the interest of our child.

    Seems like a pretty basic concept to me. Too bad it's not the dominant attitude in our healthcare system! (By "too bad" I mean it's criminal, but sometimes I like to round the corners.)

  • Chrisa April 3, 2010 at 3:39 am

    "Rounding the corners…" I like that! I'm still at square corners. At least they aren't razor sharp anymore. 🙂

  • Pandiecats April 3, 2010 at 9:06 pm

    We've been down this road too. Our son "originally" had developmental delay – which probably was a benefit since he obviously had issues in the Birth-3 age. When he was 5, I asked for a diagnosis of autism, knowing it wasn't his real problem but he had enough issues to be diagnosed with it for ease sake – didn't have to take him each year to be reassessed to show that he couldn't hold a pencil, write his name or other developmental milestones. At least with autism it is lifelong and once you have it, you have it.

    We and the doctor agreed way back then, that this wasn't a "real" diagnosis but one of convenience. Thomas, too, has great eye contact and a sense of humor. What happened though was that as the residents changed, the original purpose of the diagnosis was lost and eventually became his real diagnosis. Over the years, I kept trying to get through to the doctors that he wasn't really autistic but they wouldn't listen.

    Finally at puberty, when he was really manic and psychotic, the doctor (new resident, first time meeting Thomas) just ignored my comments about him losing 13 pounds in 2 weeks, not sleeping, hallucinating, etc. I had already requested to speak with the head of the department, a specialist in Autism. Over the years, this doctor had been "consulted" many times regarding our son.

    In less then the time it took to walk from the waiting room to this doctor's office, the doctor told me – you're right, he's manic. I could have kissed his feet – finally someone who saw what I saw! It turns out that all the consultations that I thought had happened really did not – only conversations like "hey, I have this kid that is on thorazine – what dose is usually best?" type of consult – no patient history or other information. A real eye opener for me.

    Long story short (well not really – sorry) – after Thomas' 3rd admission in 6 months, I refused to have residents involved in care, wouldn't admit him unless an attending was in charge – many other contingencies too – but I got what I wanted after hours in the ER.

    One weekend, there was a psych on-call who really sat down and took a whole history. She was wonderful – unfortunately, she doesn't carry a patient load really – she works alot with grants and research. Well, upon discharge, she agreed to take Thomas as a patient. She was a godsend to us. She understood us, wrote up a whole crisis plan that involved me and said I had authority to medicate as needed and if I called the ER and said we were coming in, that they were to get that plan out and follow it – she believed in my assessments. She was easy for me to communicate with, emailed me frequently, gave me her cell-phone number and in times of trouble, we were in contact several times a day. I think that she just really felt sorry for our family.

    The next time that Thomas was admitted (for some reason, even though she works at the hospital, when a kid is admitted to the pscy unit – the inpatient team takes over) she would go in and make sure that the inpatient team was medicating properly and if she didn't think so, she would call me and then go change the orders. She went to every meeting even though she wasn't his "provider" in the hospital.

    She was instrumental in us being able to move Thomas to a residential center and I am eternally grateful for her taking us under her wing.

    It took us 9 years to find our Doctor Angel –

  • Chrisa April 3, 2010 at 11:18 pm

    Pandi, Eri, thanks for sharing your stories too. Eri, actually sounds like your mom and I were on similar schedules – it's hard for us to first, realize what's going on when we have no experience with it, and two, be ballsy. We're conditioned to do what our doctors tell us. Would you question a doctor that said you needed your appendix out?

    Glad to hear Thomas and, you Eri, are doing well!

    — Chrisa

  • Twister April 6, 2010 at 9:42 pm

    Wow, that first hospitalization is exactly what is wrong with mental health today. It's so BLARINGLY obvious to me, that that is so WRONG. But what do I know? I'm not a doctor.

    I've recently started going back to school because of stories like that. I'm hoping that I won't have to get a PHD and an MD so that people will start to listen to me but if that's what I have to do then I will…eventually.

    You are amazing for really standing up to the doctors. There are SO many people out there who just take what they are told and use that as the truth. But you know your son and THAT is the truth – and I'm happy you are an advocate (and a blogger haha) because you really help motivate me to study!!!