Peace and Strength for All PANDAS Parents and their Children

I appreciate that a number of people from all over the world are reading this blog.

Most of you arrive having googled something about PANDAS, and I don't know why this blog shows up for you, but more than anything - aside from the obvious fact that I am hoping your child heals completely from this illness - I wish you a journey that includes love from people in your life, and love from yourself, for yourself.

This is so hard, PANDAS. What happens to your child, your family and yourself, its hard. None of us are prepared, its impossible to prepare for war. You think that everything you have ever done may make you strong and ready. But you're still only a human being, and its hard to fight this battle.

We end up fighting everything and everyone. Fighting the illness would be hard enough. But no, that's not all, is it? You have to fight your pediatrician just to acknowlege the fact that your child is, in fact, not having a psychiatric breakdown, your child is having a physical and likely curable illness caused by an infection, if they would just give you the treatment.

Then you have to fight with your insurance company to pay the bills.

Then you likely end up fighting with your spouse, or maybe your mom, or your friends, who think that you have absolutely lost your mind to be trying to get treatment - and heaven forbid, antibiotics - for your child. Antibiotics have become demonized but psych meds, oh, psych meds are fine, just throw your child on some psych meds and call it a day.

Chances are at some point you will have to battle with your child's school, to either justify how much they are missing, or to try to get them to understand that your child's behavior, or urinary frequency, endless handwashing or difficulty separating enough from you to even be at school, are due to a physical illness.

I don't know, that's crazy. How many battles you end up having to fight. No wonder everyone is just so exhausted and constantly feeling like no matter what you do its not enough. But you have to know, you must know, this is not your fault, its not you.

If you are out there, you are not alone. There are thousands of parents, just like you, trying to cure their children, and kids are getting better every day.

Be sure to go to www.pandasnetwork.org for information to share with your provider and your spouse and your child's school and your family and friends.

There are a number of facebook pages dedicated to PANDAS parent support and information sharing, and also the Latitudes blog for PANDAS parents. Please reach out and if you can't find this information, contact me and I will help you find it.

It is so important to not be alone out there. I am so healing from just too much time alone, dealing with my son's illness. My heart is broken, it just is, but I have had some recent moments of feeling very whole and very peaceful. And of remembering other times I felt that way, and enjoying those memories and connecting to them.

My life became, like, a blip. Surreal. An isolated, warped kind of existance that did not share hardly anything with the rest of the world. So weird. But now I'm coming back, and for this I'm so grateful.

Don't let this happen to you. Don't suffer more than you have to, simply because you can. Reach out to someone, today, and stay real in the world. Don't slip into nothing.

For me, in addition to holding the intention that my son's wellbeing is solid, and his future stays bright and real, I also hope and pray for my own. For my well being, and that my future opens up as bright and real. That I land solid, back into wholeness, my own peaceful place, and that my path forward is obvious and joyful and full of all the love and joy that I missed out on, all those years of suffering alone, as my child fell apart and our life disintegrated.

I am also holding an intention of well being for YOU. Keep your future bright and real. Pray for Peace, within yourself, and stay real, for yourself and for your family. Keep reaching out. Be strong and pull up your courage every day. Find inspiration wherever you can and share it and bring yourself back every day. Have someone, anyone, tell you that you are beautiful every day. Tell yourself. Its not you, its not your fault. You are amazing and brilliant. You are keeping your child alive, and your child is going to get better, because of you. You can do this.

What intention are you holding for today? I already know what you are wanting for your child...Do Not Give Up, and Do Not Settle For Bad Care. Stay true to your instincts about what your child needs and find the medical care they need, even if you have to travel, its worth it.

What are you holding as a possibility for yourself today?

One day, the world will be a better place for PANDAS children. That world is coming, but we are a long way off. In the meantime, we have to do battle. Roll up your sleeves and sharpen your weapons. But you do not have to do this battle alone.