reflections related to disability advocacy, family and (needed) cultural change
Sunday, April 10, 2011
Long Time No See... and PANDAS Syndrome
The past few months have been a heckuva ride. First, I got a new job working DAYS!!! And yes, I do really like having a life for the first time since my kids were born more than 20 years ago (!), still finding it a little hard to embrace the fact that this life is MY life, but I'll get there!
The big differences? I sit all day. No really, all day. At a computer. I have had jobs where I run more or run less, but sit?? Not ever... until now. Also, I have no keys. None. Just as well since I don't wear a uniform and I don't have any pockets...
It's weird I tell ya! New, interesting, engaging and weird.
And, Jennifer developed something called PANDAS Syndrome. Haven't heard of it?? Well, I hadn't either. And neither has much of the medical community. And many of those who have don't " believe in it" (whatever that has to do with anything...)
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (so get that black and white bear right out of your mind!) Simply put, it's OCD symptoms caused by the antibodies your body has built to combat strep. The antibodies attack the brain. It can be reversible. Of course you have to find it to treat it.
Back in January Jenn went from a friendly, social, FUNNY kid who could read a bit, was independent in bunches of ADLs and really enjoyed much of life to a kid who made no eye contact, stimmed constantly flicking her hair, saying "GUH" over and over and over and absolutely furious if you interrupted any of her activities, whose teacher told us she had to move from reading activities to picture-based activities and who was independent in nothing. She stopped answering, let alone conversing, barely fed herself, and needed help with virtually everything. And flat, flat, flat--unless of course she was raging. It was awful and so terribly sad.
We took her to the doctor several times and she had tons of bloodwork. Celiac, no. Thyroid, no. Leukemia, no. Anemia, no. You name it, that wasn't it. The only level that was out of the ordinary was an ASO titer of 400. Our pediatrician put her on an antibiotic and we thought that would be it. But it wasn't.
Fortunately my friend Louise in TX remembered a conversation with a friend whose daughter had had an adverse reaction related to their ASO titer. That led me to Google which led me to Saving Sammy by Beth Alison Mahoney.
That antibiotic didn't do much and the folks our MD consulted with thought PANDAS was not something real and that even if it were, 400 was not a very worrisome number either way. To their credit they didn't come out and say 'get off the internet, mom,' but they were clear that they did not believe. Other medical folks I spoke with implied 'this happens sometimes...' This sapped my energy in ways I can't even describe. So there we were.
It took a couple of my friends to grab me and say REALLY?? In just the tone of voice that a person needs to hear sometimes... finally I reacted:
Yeah, baloney! (Or something like that!)
Back to the doctor we went. Jenn had more bloodwork. And an EEG--no seizures. A neurology visit--nothing conclusive. And an MRI--no structural issues (thank God!!)
And her aberrant behaviors continued.
Our pediatrician and my friend who is a neonatologist (but was my friend first!) did not give up, thankfully. We did more bloodwork last week looking for something else and a repeat ASO just because. Our pediatrician called at nearly 9pm last Saturday night (Yes, on Saturday. Yes, she is wonderful.) to tell me that the ASO titer that was 400 in February is now 1600...
Jenn is now on Omnicef and it seems to be working. She is beginning to make eye contact and interact... she is not "herself," but she responds when you talk to her, smiles occasionally, and flicks her hair less. It feels like we are on the right road.
Network! My friend remembered a conversation about ASO titers. And other friends and family have held our hands, smacked me around (figuratively) and helped us through this very upsetting mess.
After I read Saving Sammy I contacted the author. She has provided lists of doctors with PANDAS experience and has a facebook site with discussion boards that have been very helpful.
Believe yourself. Some of the medical world forgets... forgets that flesh and blood is involved... forgets that the criteria of a study only determines who they studied, it does not determine who could ever catch/develop something. I was afraid of being unreasonable. I am not so scared of that right now.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.