How is Lance?
He's fine! He's great, he's happy, he's out there at school living his life. He's had a series of colds almost the entire time it seems he's been away, so like, for 8 or 10 weeks. He says everyone has them. I think it may be the smog down there. I'm sending him an amazing air purifier (thank you CARMEL) and I think it will help. Plus I just revamped his supplement program to strengthen his mucosal immune response and reduce histamine. But the main thing is - no PANDAS no ticcing no flares.
What more can I ask for? What more do you need to know about him? That's about it, really. He's amazing and he still seems well.
OK, how am I? I'm great as well. I'm changing, I'm healing and shifting from the inside out. I can't believe its been about 2 months since my last post. Its because I needed to let life work through me before knowing what else to say that would be meaningful.
One thing I can truly promise you, dear PANDAS mama and papa or whomever else is looking at this blog and praying for some hope or inspiration: There IS life beyond PANDAS. Of that I am now certain. I have dipped my toe in the waters of the future, of life outside of the prison that held me so tight and so far away from the rest of the living breathing world for far too long. I still feel like I just crawled out from under a rock, like I've missed something, alot of things, alot of living. But I'm alive. I actually feel - good. And I notice every day, the simplest things - that I'm singing to myself. That I feel more awake and clear headed. That I love the wind. That I'm going out some. That people just say hi to me again, a simple thing, like the person in Trader Joe's today, just chatted away to me. And me, playing back. Playing. That's who I am, but I forgot. I'm actually incredibly playful. Ha! Who would have known this? How could I have even remembered? For years, and even until very recently, I was completely invisible. No one ever said hi to me, because I was just, invisible. Numb. Old. Dead, really. But now, I notice that I am back to being playful with just no one in particular, just, on the street, in the store, in the airport. I'm not as afraid, and I'm not invisible.
This is HUGE!!
And I still don't know exactly my next step, but I no longer wonder IF there is a future for me, if there is love in the world for me, if there is a place for me. I only wonder, now, what it is and where it is and what its going to look like. And I do pray to God I recognize the signs and steer my ship in the right direction...
This is a gargantuan leap for me!! I was broken, bereft, destroyed on every level. So many times I had wished I was just dead. That God would just take me because the pain of living in PANDAS hell, watching my child's life be ripped from its hinges, watching him sink into this bizarre illness with no understanding of what it was or what to do for just so long, then battling our way back. Losing everything, like so many other PANDAS families - dreams, house, security, friends, marriage, sanity. UGGGHGGHGHGHGHGHGHGHGH.
My heart goes out to every single one of you out there right now and forever. IT WILL GET BETTER YOU MUST HOLD TO THIS ONE THOUGHT IT WILL GET BETTER IT WILL.
Last week I gave a presentation to over 200 school nurses on the East Coast about PANDAS. How to recognize it in students, and how to set up the kinds of accommodations and supports they might need in schools. How to case manage PANDAS. Can you believe that? There was so much enthusiasm there. Nurses, of course. It makes sense to me that nurses could be the ones to turn this disease around in the minds and hearts of the medical community. Nurses are the Heartbeat of the medical system.
Imagine if you would have gotten a call from your child's school nurse, saying hey I notice your child is having a hard time, I think maybe they have PANDAS. Here is a referral for someone who can diagnose and treat your child if they have it. And here is how the school community is going to help and support you and your child...
CAn you even imagine? But this is where things are going. There is still tremendous hard work ahead, but at least there are signs of progress and hope. Heaven knows we need it.
Also these journal articles are really a big deal, so if you haven't seen them in the Journal of Child and Adolescent Pharmacology, and printed them off for your providers, here is the link to them on PANDASNetwork.org. These are strong academic and clinical consensus papers that can help turn the medical tide: turn a non-believer pediatrician into a PANDAS provider or at least a PANDAS-friendly provider. Please, use them, print them off or better yet, purchase one of the journals through the PANDASNetwork webiste so you have all of these important documents, and pass them around to everyone you know in the medical field that may encounter a child with PANDAS - which is everyone.
At one in every 200 children, I consider PANDAS a high-incidence illness. Everyone sees them but does not recognize them. How do they stack up against the most common pediatric illnesses? Juvenile Diabetes type I is 2-3 per 1000 children, and look at the attention and resources poured into that illness and school supports. Students with severe visual impairment? One per thousand. Sickle Cell Anemia? One in 500. Cystic Fibrosis? One in 3700. Cerebral Palsy? 2-3 per thousand. These are some of the most common chronic childhood illnesses!
SO...PANDAS? One in 200 children. What are the implications of this?
Children with Mental Health Disorders? ONE IN FIVE CHILDREN in a recent CDC publication. Children with developmental disabilities - 1 in 6, including learning problems and spectrum disorders.
When did this happen to our children?
While it may be little consolation now, this is such a better time to have a child with PANDAS than say, 2006 when Lance had his big break. You could google "sudden change in my child" "overnight ocd or tics"... and PANDAS did not come up. I should know, I spent over 3 years scouring the internet, all night every night. Now, at least, PANDAS comes right up. You still have to be the one to consult Dr. Google, you have to know enough to look it up yourself. You have to know what to ask. And that also has to change. But overall, compared to how it was, there is greater awareness and greater access to information. There are way more doctors you can go to, even if you feel there is no one to go to, its many times greater than what was available just a very few years back. Or just one year back. According to the parent survey we did at the Parent Symposium earlier this year, there is a definite reduction in the time it takes for a child to recieve a PANDAS diagnosis from their symptom onset since 2012. Of course that number still has to go down to less than 3 days in my opinion. Thirty-five percent of the respondents' children still took over 3 years to be diagnosed, but there were also 31% diagnosed in under 6 months compared to a much smaller number in 2012. Still, just the fact we are measuring in increments of "less than 6 months" is a crime.
As for me, I am clearly in this for the long haul and I don't care what it takes. This week I am tackling administering IVIg to an entire family - three children, all true PANDAS. That mom? Exhausted and loving. A saint. PTSD to the max. They just sold their house so that they could afford it.
I will never stop treating PANDAS until its over. Every single day practically I am learning something new about brains or inflammation or strengthening mucosal immunity or locking down the BBB. I just need to keep my brain strong and my body healthy. I will spend whatever brain cells I have left figuring this mess out and I pray, dear God, I do it with happiness and joy, and love, and with the feeling of being home and being somewhere and with someone i know i belong with. With a healthy child whose life continues to unfold freely and openly and with resilience and knowing the future is open and bright.
Please do not give up.
There is a future for each of us. For you and for your child and family.
PLEASE, decide to make it through another day. Reach out, do whatever it takes to remember that there is truly hope, there is truly life beyond PANDAS.
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