Friday, July 29, 2011

Lions and Tigers and Bears

When I was in the hospital with Adrian, I spent many hours at night, while he slept, researching everything I could. I couldn’t really accept their diagnosis of 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 of neuropsychiatric disorders associated with streptococcal infections”, in other words, OCD 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. And the whole reason for the tonsillectomy was chronic strep.

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 fine, and the next he was a completely different child. Adrian had always shown these tendencies. So I wasn't sure it fit. At this point in my relationship with Children’s Hospital, I 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. About which I was skeptical. But I didn’t want to risk being accused of interfering with his care, as they had already unnecessarily done with Ozzie. I couldn’t risk Adrian not having either one of us there.
About 6 weeks after we’d finished up at the hospital, I wrote a painful 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 being 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 Adrian. 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 Adrian a little bit more, outside of the damn eating disorder lens. The kid had had strep about 10 or 12 times in his 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 Adrian. 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 doctor, 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 can't say I had high hopes, as I'd never been all that impressed with the practice. But I had to go anyway to get Adrian’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. G., 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. Adrian 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 Adrian 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. G. clearly had ten-thousand things on his mind when he came in, and he was in a hurry. He took a look at Adrian’s notes online, wincing a bit. The records from Children’s had made it into his file. Those records would make anyone wince. 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?

Crickets.



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 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 dyslexia, anxiety, OCD, speech problems and PANDAS. In other words, "Adrian".



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 Adrian 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 Adrian once or twice a day and let Adrian 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 pm Colorado time. I told her Adrian's basic story, she asked me some questions and she said that Adrian 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 an ‘out of network’ provider. So my task is to figure out which CU insurance will give us the greatest benefit. I'm guessing it'll cost us $20K however we do it. 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 long 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. She was very reassuring, and felt that they could really help Adrian.

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. Voeller'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 Adrian.

Whether or not Adrian has PANDAS, I feel that we have landed in the right place. I know they are going to be able to help us. That is a good, good feeling.

6 comments:

Marie Davis said...

Oh, Trrish. Honey, I had no idea. Shit. I knew you were in the hospital with Adrian for a long time, but somehow I missed the last blog entry so I didn't know the specifics, and I didn't want to pry. Jesus. I am so, so happy you've found WINSi and Dr. Voeller. I am so hopeful that she is able to help. I know that it is insane-making to know something is wrong and not have anyone really hear you or validate your thoughts and concerns. I hope, with all my heart, that this is the one. I'm sending so much love and positive energy to the whole Pottersmith family. I don't know what I could do, but if I can do anything, I am here. Take good care, all of you.

Linda said...

I'm hearing a sense of hope in this post which is so good after what you've been through. I like Dr. G a lot but he is very Western-medicine, good for some conditions but not others. Finding the right specialist can be daunting (as both my husband and I have experienced), but once you find someone you relate to and who knows & understands your situation, well then you are making progress. Keep reading, keep asking questions, and keep listening to your intuition. I'm pulling for all of you.

trrish said...

Love you, Marie. Thank you so much for the support. We can use it right now! I've kept it all pretty close to the whatever....until recently, I didn't have what it took to tell people about what happened. I'm kind of getting it out there in reverse order.

Even when it feels too hard now, I remember that it isn't as hard as it was in the hospital. So I appreciate that.

Thanks for writing the note, it means so much to me.

trrish said...

Linda, thank you for point out the "hope". That is quite true. I do have that now. This whole experience has been a struggle in and with western medicine. I avoided it for quite a while and then gave in. And it was a real tradeoff. The post about our experience in the hospital is coming....it really knocked the wind out of my sails.

I hope you are enjoying life as it is now. I don't know about you - I am working very p/t for CU, from home. I do not miss my old life very much at all :-)

Nicole said...

Boy, am I excited and hopeful for you. What are then odds of stumbling upon the perfect fit MD?

Westyblog said...

Hi Trish. My name is Sara Koster, and I live in Westminster. I was just Googling "Voeller" and PANDAS as she is on Beth Maloney's page but never responded to an email I had sent her a year or so ago. My daughter has PANDAS and is being treated quite successfully, though I am still searching for a simple pediatrician or local doc of some sort to buy in to all of this and do the antibiotic treatment. I don't know about the day treatment program as I personally, after years of research and speaking with other parents, don't feel the psychotherapy or behavioral approach can get to the true root of this...simply the IvIg treatments and plasma exchange (if antibiotics alone do not successfully treat) can suffice. I have not heard anyone speak of Dr Voeller as being an expert in this at all, especially regionally, as she is not in any of the literature that I find (minus a one-sentence mention of PANDAS in an article of hers over five years ago). I would very much like to be in touch with you and hopefully find some local docs to help our kiddos. I do take our daughter to Dr Ronald Baumgartner at the Boulder Medical Center on Arapahoe, as he has seen the positive effects of antibiotics on PANDAS kids and will adhere to Dr Kovacevic's protocol (our doc from Chicago who does the IvIgs). Okay, obviously we need to just get together and chat! I don't know if my email will show up on here, but it's thekosters at hot mail dot com. Shoot me an email please! Take care, and hoping your journey has already been successful for you! Sara