This has been bugging me, and I really need to let it go. So I’m going to publicly vent and then be done with it. Bear with me now….
The other day I shared our story on a Facebook group for parents of PANDAS. This particular group is a great support system for parents of PANDAS kids, but the majority of the discussion is typically centered on treating with long term antibiotics, IVIG, Chemotherapy, Tonsillectomies, or other medical interventions. In this case, there was a parent asking for help, and I shared a link to our blog. It wasn’t long before another member “reported” me to the administrator for “selling a product” on their page. When I saw who the administrators were, I realized that one of them had been quite condescending about donkey milk in the past. Of course, he said I was not to sell products on their group. I guess since my blog has a page with donkey milk for sale, that was considered selling it.
I told them that, to date, we haven’t sold an ounce of milk, but refer everyone who contacts us to another farmer who can help them quicker, and that we are currently stocking our freezer so we’ll have enough milk for our daughters, but that we would love to help other kids with our milk (hopefully soon!!!)
But I’ll admit, that wasn’t all I wanted to type. I wanted to scream at him. At them. For being so judgmental about my motives without knowing a thing about me (I’m pretty sure they didn’t read my blog before passing judgement.)
I wanted to tell them that this isn’t a war, this isn’t US vs THEM. Because I think at the root of the issue there is a bit of animosity, or maybe fear, that we all have as parents of PANDAS / PANS kids…
“What if I’m doing the wrong it wrong, and they’re doing it right?”
The parents that choose to do antibiotics for years or IVIG or Chemo must worry, somewhere deep in their heart of hearts, that maybe this could be damaging to my child, on another level? Maybe there is something better out there that could treat my child without damaging their gut, or leaving them with no remaining antibiotics that they aren’t already immune too by the age of 21?
The parents that choose not to do daily prophylactic antibiotics or IVIG or Chemo, but instead take the route of Alternative Treatments (Donkey Milk, Homeopathy, Extreme Diet Changes, Chiropractors, Essential Oils, Naturopathy, Prayer, and pretty much anything else not covered by Insurance), worry that maybe it’s not enough…maybe we should be falling in line for IVIG? What if our child gets sick again and it’s ALL OUR FAULT for not keeping them on antibiotics FOREVER? What if there is another underlying infection that I’m missing? Something horrible that really needs antibiotics, right NOW? What if I’m denying my child the very thing she needs?
And that’s where the line is drawn in the sand.
Us vs. Them.
Set up camp. Draw up battle plans. Shoot the wounded.
Surely one of us is right, and the other one is wrong…Right? RIGHT???
We parents, we all love our kids. We want them back. We want them better. We want them healed. NO MATTER WHAT IT TAKES. If that sounds crazy, if that IS crazy, so be it. We’ll gladly go to crazy town if that means bringing out kids back to the land of sanity. Smiling. Joyful. Creative. Fearless. Beautiful, Healthy children.
For some of us, crazy is IVIG. For some of us, crazy is DM (Donkey Milk…if I abbreviate it, it doesn’t sound so crazy.) And honestly, the hardest thing about this disease is that what works for one child, may not work for another. Sometimes even siblings with PANDAS need different treatments to heal.
Let’s stick together. Let’s love each other. Let’s share our stories and share each other’s stories until EVERY parent knows ALL their options. Then let’s pray for each other, and for one another’s sweet kiddos.
You never know when you may end up in the other camp, looking for answers and waving the white flag of surrender.
Whew. I feel better now. Thanks for letting me vent. By the way, I forgive you, Mocking Administrator and Tattle Tale Parent. You know who you are. Forgiven. That’s who.
As a token of peace between PANDAS parents on both sides of this battle, I wanted to share a link to another Mom of a PANDAS blog. She’s taken the IVIG and abx route, and her story is amazing! This woman is a kindred spirit, she’s doing everything she can to get her child back, and she’s leaning on Jesus the whole way. I’m on HER side. And although I’m sure she’s never read my crazy blog, I’m certain she would be on MY side too. Which is the way it should be.
On another note, I believe it’s this same fear that is at the root of the vaccine debate. But that’s a whole other can of worms that I’m not opening today.