From PANDAS to Donkey milk

It’s a common theme amongst parents who have been through the hell of PANDAS and came out on the other side. We shed the scorched clothes, wash off the stink of smoke and put the memories of walking through the fire as far behind us as we can. We leave the PANDAS groups and the heartbreak. The PTSD and trauma is real.  Reading their stories is too painful. So, we join the world of the living and leave the past behind.

And the farther we get from the horror, the less we hear their cries. The cries of the parents and their children, still stuck in hell.

Until someone like Melisha at Health Freedom Stories asks us to share our story, and the risk of dredging up the ashes and getting burned again is worth the pain, if it helps just one family escape from the fire.

As I type these words, my daughter races around barrels on a horse bigger and more powerful than I care to think about. She is fifteen. She is fearless. 

She barely remembers going through the fire.

But I will never forget.

It was June 6th, 2014. She was six years old. The day before, she was fine. She was more than fine. She was incredibly creative, incredibly smart, incredibly kind, incredibly loving. She had prayed and asked Jesus into her heart just hours before.

And now, here we were, in hell on earth.

I was the parent that did “everything” right. I breast fed until she was 18 months. I didn’t follow the recommended “well child” schedule. I fed her only organic baby foods. We homeschooled. We didn’t have a T.V. in our home. The scariest thing she had ever seen was the tickle monster on a Veggie Tales DVD.

And now, overnight, the little girl we knew and loved was gone.

In her place was a terrified child. A child who saw monsters in the night. A child who forgot what it was to create. A child who couldn’t understand the simplest of children’s stories, washed her hands until chapped and bleeding, melted in despair if her meal wasn’t prepared to a level of extreme sanitation, and refused to eat if a germ could have cross contaminated the plate, the fork, the straw. A child who had never had the slightest temper, who now raged with what seemed to be a superhuman strength.

This wasn’t something you posted about on facebook. This wasn’t in the parenting textbooks. This wasn’t even on my list of things to fear…like Autism…or cancer. In my despair, I whispered to my husband, “What if this is a brain tumor?” He reassured me that it wasn’t. I told him he didn’t understand…I was hoping it was a brain tumor. Something easy. Something they could cut out and she would be better again. But mental illness? That wasn’t fixable. Everyone knew that. And I couldn’t accept that the daughter we knew was gone.

This was shameful. This wasn’t something you put in the church bulletin and asked for prayers from the congregation. They don’t put you on a meal train or come visit with flowers for this. You don’t mention it. You suffer in silence. Or suffer the consequences of speaking about the taboo.

And if you do, you open yourself up to the whispers, the ridicule, the innuendos. Or worse, a visit from child protective services. 

Only the most desperate parents tell anyone this was happening to their child.

And we were desperate.

I called my pediatrician and explained her symptoms. He asked if she had been sexually active…molested???

We got an appointment with a well-respected psychiatrist. She refused to make a diagnosis. In response to my questioning the cause and treatment, she replied “These things take YEARS…we don’t want to give them labels.” I told my husband I could have learned more in 15 minutes on the internet than during that appointment.

We were one of the lucky few. A family member recommended a psychologist. A desperate phone call. A cancellation that opened up an appointment the next day. 

We sat in the office of Richard Dreyfuss’s doppelganger. Plush. Expensive. Walls of windows and tufted leather chesterfield sofas.

He didn’t even want to see our daughter. He glanced at our paperwork and looked at us over his spectacles. “So, you called yesterday? And got in today? God must be with you, it’s impossible to get an appointment like this. My wait list is months.” We sat on his couch, waiting for a diagnosis, a treatment plan, counseling, therapy…or worse.

He smiled his best Richard Dreyfuss smile.

“Well. I could keep you as my best client for the next 15 years, or…I could tell you your daughter has PANDAS from strep. Get her on antibiotics and she’ll be fine.”

We could have wept for joy.

So simple. So easy. A few magic pills and our daughter would be fine.

The problem was, the magic pills weren’t so magic.

Helpful? Yes. Some of her symptoms lessened. But new ones appeared. A blinking tic. The constant “maybe” after every statement. And she still couldn’t say “I love you” to her Daddy, or grandparents, or anyone other than me, her Momma. And then there were the rages and melt downs…this wasn’t the cure we had hoped for. The magic pills had failed us. 

Our pediatrician did whatever I googled and asked him to do. After all, this was supposed to be “rare.” It was understandable he had never heard of this disorder. Many physicians didn’t even believe it existed. Yes, it could be this thing called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep), but, it could also be a brain tumor. He scheduled an MRI. The next available for probable childhood brain tumor was October. If it had been a brain tumor, our child would have been dead by the time they could “fit her in.”

My faith in the medical system, what little I had, was quickly disappearing. 

At the time, there were very few doctors who believed in PANDAS, much less claimed to treat it. One of these experts was in Texas. One was in Arkansas. There was no one in our home state of Oklahoma. We would go out of state if that was what it took to get help for our little girl. I called for an appointment.

“He has a waiting list of 3 months, let me just schedule you for next available…how about October?”

This was becoming a theme….

“Wait,” I interrupted, “can you tell me how he treats?”

“Well, what do you mean?” she asked. (She obviously wasn’t used to parents with interrogation tactics.)

“I mean, does he just prescribe anti-psychotic drugs?” I knew enough to know my child’s brain was under attack, and that drugging away the symptoms would be like cleaning up the burglar’s mess while the robber was still going through the jewels.

She paused. I already knew the answer. “Yes, that’s the accepted treatment. Would you like me to schedule your appointment now?”

“No thank you.” I hung up.

I called the National Institute of Mental Health. They were doing research on PANDAS. They were the best. They would know what to do.

“Well, our best guess is to treat it like rheumatic fever…either antibiotics every day until she’s 18 or 21, or IVIG. And IVIG isn’t covered by insurance, so you either pay $10,000 per treatment, or you can sign up for our trial…”

We were on our own.

We prayed. We cried. And I researched. If the best in the nation were just “guessing” with my child’s brain, with God’s help, surely, we could find an answer. PubMed became a close friend, but there was little published about PANDAS. The only test proving this disorders existence was actually in Oklahoma, the Cunningham Panel. It was an incredible tool, a groundbreaking test that would be instrumental in getting this disorder recognized by the medical community, and subsequent help for our children. But, at over $1,000, a test to confirm the disorder scientifically wasn’t in our budget.

Every extra penny we had was going toward treatments for our little girl. A naturopath in Oklahoma. A homeopath in New York. An iridologist and bottles full of herbs I’d never heard of. Weston A. Price and whole foods. I threw out half our pantry. We bought everything organic. Then everything paleo. Grain free. Gluten free. Dairy free. I grew up on a wheat farm. My cinnamon rolls were legendary. And now I had to relearn how to cook for my family while navigating a consuming childhood illness. We ate nuts and berries.

When she slept, I researched. I found a website with two circles overlapping. The circle on the left was PANDAS. The circle on the right was Autism. They overlapped in the middle. No one was addressing the neuroinflammation. 

There were no good answers for PANDAS. It was new, it was unknown. But Autism? Autism had been around a while…and there were rumors of children recovering. If these parents were recovering their children from a lifelong sentence of Autism, what did they know that the doctors didn’t?

I began researching what was helping within the Autism community.

And I found a naturopath recommending camel milk for Autism. The stories were promising. And if there was a glimmer of hope, we were willing to try it. I had been researching the gut brain connection. Perhaps there was something here. After all, we had already tried raw cow colostrum, raw cow milk, raw goat milk…camel milk wasn’t such a stretch.

We bought camel milk from an Amish farmer. It tasted awful. Like bitter, salted, chunky milk. I added some real maple syrup and bought her a special shot glass. And…it actually seemed to help. It cost a pretty penny, but it, along with a strict paleo diet, were a part of her journey back to herself.

Still, she wasn’t 100%. My husband felt it more acutely than I. I wanted to believe she was ok again. He knew she wasn’t. It had been months since onset of this wicked disease, and his little girl had never said “I love you, Daddy” since that day in June.

She wasn’t better yet.

But, we would do whatever it took to keep her as well as we could. If that meant milking camels, we would milk camels. We visited a camel farm. Had a near death experience there. And discovered we wanted nothing to do with camels.

I called the naturopath. “Can we milk a llama? Or an alpaca?” (Something in the camelid family that doesn’t kill Shetland ponies and crush people’s skulls? 

She harumphed and replied they wouldn’t give enough milk; milking alpacas wasn’t a thing. 

“Try donkey milk” she said. “Some kids do better on that.”

Wait. What?

Donkey milk?

Camel milk I had heard of. Camel milk was becoming mainstream. But donkey milk?

There were donkeys on every other patch of red dirt in Oklahoma. But no one had ever heard of milking a donkey.

Didn’t they kick?

None of that mattered when we gave our daughter her first dose of donkey milk.

Her Daddy came in the door half an hour later, she looked at him and said, “I love you, Daddy.”

And he looked at me and I knew. We were milking donkeys.

And that was the beginning of our donkey milk story. We didn’t share it at first. I was scared it wouldn’t last. Scared to jinx it. This, having our little girl back, felt too fragile to believe.

But then the stench of smoke from the fires of PANDAS started to fade. And the burns began to heal. And more and more families began to come out of the shadows and share their pain. Most chose the traditional route. IVIG. Antibiotics. Anti-psychotic drugs.

But there were a few…a handful of us…who took the road less traveled. The non pharmaceutical approach. We found each other in a facebook group: “Saving our PANDAS” was started by another PANDAS parent, looking for healing for their children beyond the answers suggested by the naked emperor, dressing up a disease for show.

This was a safe place. These were parents going against the norm. Homeopathy. Diet. Neuro-chiropractic adjustments. And then there was me, “The donkey milk lady.” Not one of these mothers made donkey milking jokes. They understood what lengths a parent would go to if it would save their child. Each of our journeys was different. But each of us celebrated when we found the keys for our children.

 Our little herd of mammoth donkeys grew. And our feed bill grew with them. Strangely enough, there wasn’t a big market for donkey milk in Oklahoma. Or in the USA for that matter. Donkeys were the subject of jokes, not a source of a super food health drink.

In our efforts to be healthy and get rid of toxins in our lives, I began making donkey milk soap. Natural deodorant. And giving away my creations to family and friends. I knew that in Europe, donkey milk skincare was a luxury. Perhaps, in Oklahoma, we could sell our donkey milk soap to pay the feed bill, if no one wanted to drink donkey milk?

I drew a soap box. My little girls critiqued it. I re-drew it. Added more color to suit their little girl tastes. I created a website and a logo, DulceDeDonke.com was born.

And then we joined a group promoting Made in Oklahoma products, and they shared our products and our story in a press release.

And suddenly we had three T.V. news stations at our farm within a week. A billboard on the highway touting the story of a family milking donkeys. And a wait list for donkey milk.

There’s more to the story. The miracles that happened along the way. How we started a nonprofit HeeHawForHealth.com to provide Wellness Scholarships and host Health events to provide resources for other PANDAS children and families going through chronic illness. How we became the first to import freeze dried donkey milk to the United States that we could ship to anyone, anywhere in the USA donkeymilkforhealth.com. How the FDA seized our milk without reason and shut us down for 7 months. How, with half our income gone, we were provided for, and our donkeys were well fed through one of the worst droughts and highest hay prices since the dust bowl.

But what motivates us to stir up the embers of the ash heap of memories?

It’s the parents who have no idea where to turn, who are out of options and out of funds. They’ve realized the emperor has no clothes, but he’s already cleaned out their bank account to pay his tailor bills.

And their children are still in the fire.

This disease? It doesn’t discriminate. Rich. Poor. Black. White. Every nation. Every child. No one is immune from waking up one day and finding their life turned upside down.

Those of us who have walked through the fire owe it to them to stir up the embers. Hold their hands, and help them find their way out.

Maybe their path out of the fires of the hell of PANDAS won’t be donkey milk. Maybe it will be one of the many other routes to healing. Maybe, just maybe, you have the key to their child’s door out of hell. But no one should have to stay in hell because they don’t have the financial means to pay for a set of keys. No one should have to say no to a treatment they believe could help heal their child, pharmaceutical or otherwise, because their insurance won’t cover it. Or their bank account is empty.

It’s up to all of us to share our keys and help them keep trying the doors until the find the one that fits. For some of us, that’s milking donkeys. For some, it’s research. For others, it’s sharing their story with a friend.

And some fund Wellness Scholarships for children through nonprofit’s like Hee Haw for Health.

And some get down on their knees and pray.

All of these gifts are the keys to open the cell doors locking our children in the hell of PANDAS, and I believe, if we all put them together, the locked doors of this disease will open, and all our children will be set free.