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

WHERE DID I GO?

I've been waiting to post something until I have something worth saying. Each word on this blog is holy and precious and integral to the story and the unfolding of Lance and of myself back into our lives in a post-PANDAS world.

I'm changing. I'm changed. I'm on the threshold of a new life. Its the right time and the right place and the right thing but its scary today.

But before I get into that I all, let me tell you about my son. My son who just completed his freshman of college. My son who is awesome and brilliant and loving and called me adorable the other day.

My son who is HEALTHY. Healthy. And his health continues to improve.

Two nights ago he told me HE NEVER EVEN THINKS ABOUT HAVING TICS ANYMORE. Shocking. He no longer takes anti-inflammatory herbs at bedtime, just in case, or feels the need to pop a few ibuprofen from the massive bottle he carried around in his back pack for years - JUST in case a tic MIGHT come. He's off of melatonin after all these years, for the most part. He goes to sleep like a normal person, now, at 19, nine years after the big PANDAS break, after 7 unbelievably sleepless exhausting years, he goes to sleep like a normal person, without wondering if the tics will come and torture him and drive him crazy before the morning comes.

My son who is HEALTHY. How about that? Believe me I say this with profound awe and humility and daily gratitude.

Every single challenge he has had this year, however big or small, I am aware of the grace of having a normal child with Normal Kid Problems. What a completely different existence, just to have Normal Kid Problems.

But when will i declare him healed? When will I stop watching watching watching, wondering and thinking about his tics? Someone just asked me this the other night. The answer is, I don't know. How can any of us know? If you ask me I will tell you, I see him as healed. All the evidence is there. But what does life look like for healthy post-PANDAS 19 year olds? 29 year olds? Will I ever not even think about PANDAS for a single day? The way he has stopped worrying about PANDAS, and stopped worrying that the tics are coming back, tonight?

I just don't know. I don't know, but I'm willing. That much, I can say.

Its hard to believe that just one year ago, exactly, last Memorial Day weekend, I had my first PTSD panic attack. (See I'm Coming Out, Part I, II and III, June 2014). Now, one year later, I am well. I am GOOD. I am evolving. And although I will never be the same - my innocence was absolutely ripped from me - I am leading with my happiness, and miracles are unfolding for me like crazy, every day.

There is a line from a psalm, I don't know which one it is, but it says something so simple - God, the soul you gave to me is pure. I wasn't sure about that for a long time. Because PANDAS infected me, it infected my soul. It sucked the life out and my faith, right out of my soul, and in its place it planted a zillion filthy black jagged shards of glass. And pus. It left me in a broken bloody heap by the side of the road. But I see and own that I have purged that level of PANDAS from me. At the level of my soul,I am fully restored. I do feel like my connection to the earth and to my God and to my deepest nature are fully realigned. I am so grateful every day. This was not an accident. If you have read these pages, you know my journey. I scraped and clawed my way back from PANDAS hell one day at a time, one hour at a time, and often one minute at a time. I know you have done and are doing the same. I have no doubt that it is our journey, our collective PANDAS journey, that I am living, with its downs and ups. And I am lucky, so lucky and willing to hold a space for YOU to find some healing; to disinfect your fractured purulent PANDAS soul and find your way back to goodness, to purity, to wholeness. When you are lucky enough to get back to having Normal Child Problems.

But tonight I'm scared. I'm scared of all this changing. I'm scared of picking myself up from my little house in this little town, this house that has been my refuge and my hell and my home and my prison. This house that watched our family shatter into pieces. This house that knows the darkest secrets of the darkest nights of PANDAS hell. I'm leaving it. And I'm afraid. And relieved, and interested, and blessed, and insecure, and solid, and successful, and scared. And I'm not invisible. I'm not invisible any more.

At the level of my soul, I am restored. The rest will come.

So, looking ahead, I know that the question of Where Did I Go is not nearly as important as the question Where Am I Going? Where can I go? How can my life look as a healthy, social, balanced person with pure soul? A woman with a healthy child and a second chance? No money, no credit, but a huge heart and relentless dedication to the cause.

More to Come on that one.

Much Love to YOU, And whatever you do...
DO NOT GIVE UP.

NEVER EVER EVER GIVE UP ON YOUR CHILD OR ON YOURSELF.
Amy