Thursday, September 29, 2011

Lions, Tigers, and Bears

When I was in the hospital with A, I spent many hours at night while he slept researching everything I could. I couldn’t really accept that he had anorexia. He had never wanted to lose weight. I read about OCD, eating disorders, schizophrenia. I even read about something called PANDAS. When I first heard it referred to, I thought “this has to be him”. PANDAS - ‘pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections”. In other words, OCD, and other horrors, that develops from the strep bacteria. His problems that landed him in the hospital had started when he’d had his tonsils out in mid-November. He’d always had OCD-like tendencies, and had temper tantrum-like mood swings that we referred to as ‘meltdowns’. Some times were better than others, I was never sure what all the variables were, exactly. The meltdowns seemed to relate to his expectations and his perceived performance. But he'd gone off the deep end after the tonsillectomy.

But the more I read about PANDAS, the more I wondered. I read that its hallmark was a sudden onset. As in, one day your kid was find, and the next he was a completely different child. At this point in my relationship with Children’s Hospital, didn’t think bringing it up was smart. I didn't think he completely fit the traditional profile. I had already fought them on the anorexia thing, and I was being told that all his brain issues would clear up once he got back to his target weight. I was skeptical. But I didn’t want to risk being accused of interfering with his care, as they had done with O. I couldn’t risk A not having either one of us there.

About 6 weeks after we’d finished up at the hospital, I wrote a blog post on where things were with Adrian. Things were bad. I mean, his weight was back to normal. But his mind wasn’t. The kid was tortured by his brain and I was tortured watching it happen. A long-time friend, Jay, happened to read my post. He sent me an email saying he’d talked to a psychologist friend of his about what I’d written about A. She’d mentioned PANDAS to him, which he then mentioned to me. He said he thought I may already had considered it, but wanted to mention it anyway.

I started writing back to him, to say that yeah, I had considered it. As I was writing, though, I starting thinking about A a little bit more, outside of the damn eating disorder lens. The kid had had strep at least 10 or 12 times in his short life. He’d had his tonsils removed because of chronic strep. After the surgery, the surgeon told me his tonsils were ‘dripping with bacteria’. His meltdowns had begun sometime around kindergarten or first grade, which was also around the time he’d started getting strep. And his behavior had radically changed after his tonsillectomy. Oh my gosh - I literally interrupted my narrative to Jay and said “I will have to write back later - I have got to find someone I can talk to about this”. Jay had mentioned that he wished he could do something to help. I told him he may well have done something downright amazing just by making me consider PANDAS again.

I started researching PANDAS and doctors. I found stories that were more similar to A. I read that PANDAS can cause something that looks like anorexia. And of course, PANDAS is controversial. A bacteria causing a brain disorder/mental illness? It took western medicine far too long to accept that a virus could cause an ulcer, this was no doubt going to be a hurdle for them. As if finding treatment for eating disorders wasn’t hard enough, this was going to be harder. For the first day or two, I couldn’t find anyone in Colorado who was considered “PANDAS friendly”. I was starting to think I’d need to take him to New Jersey - there was a doctor there who had treated a number of PANDAS kids. I stumbled upon a book called “Saving Sammy”, written by a mom who’s 12 year old son had turned out to have PANDAS. I ordered the book. I continued my research, and did find one doctor whose name was mentioned as possibly being open to PANDAS - he was in Boulder. Dr. Voeller was associated with an Institute for pediatric neurodevelopment illnesses, called “WINSi”. I noticed the address of the institute was same building as my own long-time psychiatrist, Richard Suddath. I looked up Dr. Voeller in our insurance companies directory but no luck.

So I started thinking of other ways that could be more cost-effective. I settled on going to our family medicine practice and seeing what they knew about PANDAS. I had to go anyway to get A’s prescriptions transferred from the doctors at Childrens, so I made an appointment for Thursday. I was leaving on Saturday for a business trip to Portland and it would feel good to get this all moving forward.

Thursday morning, “Saving Sammy” arrived from Amazon. i was on my way out the door and threw it in the car, thinking maybe I’d show it to Dr. Granston, who I had my appointment scheduled with. I wasn’t sure how easy it was going to be to have them assume the prescriptions, since they were all psychiatric meds, so I was a little nervous. A was at band camp, so I had some time for lunch before my appointment.

I got into the office at about 3:00. Dr. Granston was running late. So I waited around and started reading ‘Saving Sammy’. I could not get through more than a few pages without tearing up. I felt like I was reading my own child’s story. it was shocking how much Sammy and A had in common. Not everything - there were some major differences, too. But there was enough there that I just couldn’t help but start believing that yes, “this is something”.

Dr. Granston clearly had ten-thousand things on his mind when he came in, and he was in a hurry. He took a look at A’s notes online, wincing a bit. The records from Children’s had made it into their file. He asked me some questions, and I told him some of the gory details about our experience. He had no problem taking on the prescriptions and gave me 5 refills for each one. I felt a little stress go out of my body. So I took a deep breath, grabbed my ‘Sammy’ book, and dared to ask him about PANDAS. Had he heard of it?


In his defense, he wanted to help me. He saw that this had been a nightmare, and he’d shared some personal things with me about his sister and his mom. But he wasn’t the guy. He didn’t know about PANDAS, let alone believe it could happen. I hadn’t really expected anything, though I was very glad to have the prescriptions.

I went out to my car. Having had much of the day on my own, I was in my favorite ‘go with the flow’ space. A recent book I’d read called it ‘float more, steer less’. As I got in the car, I thought, ‘I’m going to float’. What that means to me is, I will let my intuition choose my next move. With Adrian still at camp, I had time. So I drove over to the building my psychiatrist worked in, and walked onto the first floor, where Dr. Voeller’s office was. I found a door to the suite for “WINSi”. WINSi is an acronym for ‘Western Institute for Neurodevelopmental Studies and Interventions’. I walked in.

There were a series of offices - occupational therapists, speech therapists, psychologists, neurologists. It felt encouraging, but there was no reception type area that I could see. I thought, “oh, maybe I just have to call them”. I sat down in the lobby to consider. Then thought, “no, I’m here, I am going to find out what I need to know”. So I walked through the section of offices and asked one of the therapists about who I could talk to. She directed me over to Josh, who was in the main office for WINSi. I smiled at Josh, took a deep breath and hoped for the best. I told him that I had a 12 year old son, who had some brain functioning problems and I was looking for help with him. He gave me an overview of what they do. They run an intensive evaluation and treatment program for children with dyslexia, ADHD, Asperger’s, anxiety disorders and other neurological problems. I said ‘my son is dyslexic, and he has a huge anxiety disorder - I’ve been told it is OCD”. He said, “well, we find that kids with anxiety tend to process it in ways that look like OCD, but aren’t true OCD.” That sounded very true to me. I said “do you guys know anything about something called PANDAS?” Josh said, “oh yes, Dr. Voeller, our neurologist on staff, she is one of the leading experts on PANDAS in the western US."

That’s when I burst into tears. Not because I had assumed she was a man, but because I had landed in heaven. Here's a neurologist who specializes in dyslexic kids and knows about OCD, speech problems and PANDAS. In other words, "A".

I said “I need my son to see Dr. Voeller”.

He told me she was very hard to get in to see. He took my information and told me he’d try and get me scheduled.

Two days later, I left for Portland, OR, for a software conference for work. It was a bit of a risk for me to go - I wasn’t sure that A was going to handle things ok. But another part of me thought we could both use a bit of a break from each other. So I ended up going. The first few days were rough - he was calling me every couple of hours - he was having a lot of trouble with his mind. I talked with Ozzie and he suggested that I only talk with A once or twice a day and let A figure out how to get by without me.

I was in Portland for 4 nights. On the third night, I got a call from Dr. Voeller. She was working late at her office - around 9:30 Colorado time, I told her A's basic story, she asked me some questions and she said that A sounds like a very possible/probable PANDA syndrome kid. I cried, of course. She said that the tonsil surgery could very likely have stirred things up. Her 'institute' does a 10-week day treatment program, from 9:00 - 2:00, m - f. The kids do one-on-one work with various kinds of therapists and specialists. It must cost a fortune. They gear each kids program specifically for them - if they need to learn how to deal with their disordered mind, or speech therapy, etc. that’s what they do. I have to work out the insurance and financial stuff somehow. They aren’t fully covered by any insurance, but they can qualify for reimbursement as on ‘out of network’ provider. So my task is to figure out which CU insurance will give us the greatest benefit. She told me they are very, very booked up so we'll probably have to wait until the October session. I don't care - we have waited this long. We'll get in to see her before then, and she'll spend some time with him. She said she’d want to tweak his medications a bit, and he’ll probably do a course of antibiotics. I kept telling her little things about our experience and she'd say "yeah, that is not uncommon. most hospitals really don't know how to diagnose these things correctly', etc. I can't help but feel like angels are watching out for Adrian, somehow. Because my goodness, if the universe is going to let young kids become mentally ill, then I think the angels have their work cut out for them. I rarely say something is "not fair", but after everything I saw at Denver Children's, I'm willing to say it now.

If I can get him in to Dr. Voellner's progam, then that is going to be 'school', for now. After that I'll see how he is doing. I'm thinking for the rest of this year (7th grade for him) I'd do part-time home school, part-time some other school. F/T home school just won't work for me. Even Dr. Voeller said she didn't think it (f/t home school) was the best thing for either me or A.

Whether or not A has PANDAS, I feel that we have landed in the right place. I know they are going to be able to help us.

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