Saturday, September 12, 2015

Life Beyond PANDAS?

OK, its now 12 weeks since I've relocated to my new practice. I like it. Its hard, though, so much harder than my old practice in a totally different way. The people are awesome. The office is so humble and dedicated to take the best possible care of the patients, and also of each person that works there. I love that.

But clinically, its hard. Its like, jumping out of the frying pan into the fire. Because PANDAS is in itself, clinically very challenging to treat, but something about it makes sense to me now, I just get it. But PANDAS with Lyme and coinfections, that's tough. Its hard in kids and its even tougher in adults, because so many of them have imbalances going in and are incredibly sick. Kids are still growing, producing enzymes and growth hormone and are super programmed to heal. Kids overall are more physically resilient and able to beat these illnesses. but its hard.

So I put myself back in school. Every night I listen to training tapes and videos about Lyme and coinfection treatment. I'm doing an extended weekly training in the powerful German biological medicine behind the homeopathic and herbal Pekana / Syntrion and SanPharma product line. I'm learning LDA/LDI. My brain sometimes feels like its going to explode, or maybe implode is more like it. But this is why i'm here, this is why I put myself in this specific practice, for the training and to up my clinical game so that no child that walks in with PANDAS and/or Lyme or whatever immune dysruption they throw at me, leaves unhealed. Thank God for the most part, my brain is holding up.

Personally, I like it here on the peninsula. I like the diversity, the big trees. Lots of energy but also lots of nature. I like my house, it feels grounding and safe and its pretty and open. There's alot of life happening here, people living life and lots of exploration to be had.

But life beyond PANDAS? I still don't know.

My extended length of time in PANDAS hell, and the losses incurred there, still effect me. I feel it every day. I still like I'm crawling out from under a rock. I still feel somewhat like a foreigner, although I do have some times where I feel connected. But overall, I still feel like a visitor on the planet, a stranger to the good things of life. Writing this is bringing up sadness. My connection to life broke, yes. I have done alot of healing work and likely more to come.

I do believe I am infinitely more cohesive within myself and healed than i have been in many years. My soul underwent unspeakable darkness and terror. I have to still believe that somehow my future is still open, that i'm a good person and that I am worth loving and including. That i will find a way to honestly and tenderly re-open my heart and allow people back in. Aside from of course, other PANDAS moms and providers who share my pain. How can I include being present to the absolute fragility of my heart yet still find a way to let others in? I don't want to live the rest of my life in isolation.

Its not that I blame people who have not been through PANDAS; that have happy healthy children, marriages, money and have been doing things with normal person problems instead of what I've been through. At least I don't think so. Its just that I feel like I don't have anything in common with any of them. I just feel like such a stranger to that world. Oh, plus, you know, I got divorced when Lance was at the zenith of sickest and we were in bankruptcy. Maybe I never had a chance to process that before, and maybe that's part of what I'm feeling now, the loss of that love. The solitary-ness of being almost 60 in a new lovely place, the world an open door - but am I seriously knocking hard enough? I have to look at this, I am realizing right now. More to come on that.

The good news is that awesomely, without a doubt, many children with PANDAS get better faster now, because diagnosis is more available. Many parents stumble into learning about PANDAS more quickly for most part. So that new PANDAS families may not have to go through the utter personal oblivion as many of us who came before. However, there are still not enough providers that know how to treat PANDAS kids fully.

In August I was lucky to be able to attend and briefly address the Missouri PANDAS conference, on behalf of PANDASNetwork.org. The conference was produced by an amazing group of moms, of course, and on the first day they gave medical continuing education units to over 60 providers that attended. Still, so many parents came up to me and cried that they cannot access antibiotics or IVIg for their children, and that travelling for care is very difficult and expensive. So many children - even with a KNOWN PANDAS diagnosis, still suffering due to lack of local care! This is intolerable!!

Last week I called a family with a PANDAS child who also has Lyme because I realized I hadn't heard from them all summer. The mom said she hadn't called because their 7 yr old DS has been totally 100% better for months and they didn't want to jinx it. That is so amazing. This little boy was so ill. Five years old, big time OCD and behavioral regression, PANDAS and Lyme IgM+. We treated him for a year with antibiotics and herbs, finally talked them into doing an IVIg early in the spring, and he almost immediately turned the clinical corner. He's 100%.

KIDS GET BETTER. FOR THEM THERE IS LIFE BEYOND PANDAS.

If your child isn't better, its because you're missing something that needs to be treated so keep digging. OR...PLEASE do IVig if you haven't, because it can be a total game changer.

So...Life Beyond PANDAS, for our kids? YES!

For us? hmmmmm

As connected as i am to other parents on facebook and social media, I know that, for the most part, we are a sorry lot. Even so I can only hope to prove that there IS life and love and freedom and true happiness beyond PANDAS for all of us. And in the meantime - and forever - we always have each other.

Thank you for always being there for me during my journey, and for all of the endless work you put into healing your child and taking care of your family and all the rest of us.

Please, Don't ever give up on your child, keep looking.

with Love

Amy

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