To start at the beginning and read the long version, please go here, Pre-PANDAS life and where it took us. It’s a doozy. Grab a tissue.
For the rest of you, here’s the short version…
On Saturday, life was perfect. Happy, hard working husband. Two beautiful, healthy, smart, kind, creative daughters. A dog. Three kittens. Baby chicks. Summer fun on the lake. Bliss.
On Sunday, life fell apart. Our 6 year old daughter disappeared, overnight. It started at church, when she became petrified at being left in class. Terrified. Whites of the eyes. Cold sweat terror. She literally reeked of sweat, awful B.O. She’d never stank of like that before! That night, she was suddenly immobilized over brushing her teeth. Her toothbrush had become a swarm of germs and she couldn’t bear to let it into her mouth. The next day was worse. More terror, then rages, out of control hand washing (going through a container of soap in a day / OCD behavior.) Scared to death of me being out of her sight (severe separation anxiety.) Then came the manic behavior, muttering, insomnia, night terrors, hallucinations, and overnight anorexic…so scared everything was contaminated that she couldn’t eat it, or drink it, if it had been touched. It’s difficult to describe how awful it was, to watch your child go from being a precocious, perfect, happy go lucky little girl, to a child you don’t even recognize. Overnight.
Every day she got worse. Slept less. Ate less. Drank less. Slipped farther and farther away. I called my pediatrician (we had moved 3 hours away and I didn’t have a new one yet.) His guess was some traumatic sexual experience. I said “She’s 6!” He said, “Oh, I thought she was 16.” He prayed with me, and said sometimes kids go through these “phases.” No answers. On Wednesday we took her to a shrink. The “Dr.” said, “well, we don’t want to give these things a “label” but it can take years and years of therapy.” The dollar signs practically rolled across the whites of her eyes. By Thursday we got her in to see a different psychologist an hour away. Within the first five minutes of our appointment he looked us in the eyes and said, “Well, I could keep you as my best client for the next ten years, or I could tell you your daughter has PANDAS disease. Get her tested for strep, get her on antibiotics, and she’ll be fine.” We left his office on cloud nine. Little did I know, it wasn’t quite that easy. But for the moment, we had a glimmer of hope, and we clung to it for all we were worth.
The next day we drove back to our old pediatricians office. I had called ahead and told him what she had so he could test her and treat her for it. I literally sat in his office and looked up PANDAS disease and showed him what they recommended. He tested her for strep, and she had a raging case. So bad, her breath stank with it (strep breath, he called it.) He also did blood work on the rest of us to see if anyone else was a carrier. Just to be safe, he put the entire family on Cefdinir (antibiotics) for strep. He gave us a weeks worth. That night, I was doing more research and discovered she should be on antibiotics for a minimum of 3 weeks. I called him on Monday and he increased her prescription to a three week dose. (He was wonderful, and very humble and grateful to know about a disease he admitted he’s probably missed in the past. In fact, not one of the doctors in his large, big city office, had ever even heard of PANDAS.)
Unfortunately, a week into the antibiotics she was not miraculously cured. In fact, she had developed a new “Tic” with her mouth, clicking with her tongue. I called my pediatrician, discouraged. He was sweet and supportive and prayed with me. But he had no magic bullet answers. We discussed putting her on prophylactic antibiotics (the NIMH told me their “best guess for treating PANDAS is to put them on daily prophylactic antibiotics every day until they are 18 0r 21. Or IVIG treatments.”) He was willing to prescribe them for her, but agreed with my concerns about them.
Over the next three weeks I became increasingly sicker, while trying to care for my daughter, and helping with the wheat harvest on my parent’s farm. I had what I thought was a case of C.Diff from the antibiotics. After a trip to the emergency room and an IV of fluids, we learned it was not C.Diff, but my system had been so completely overwhelmed with the antibiotics that it flushed everything. Literally. Diarrhea 20 plus times a day. All this while researching this thing called PANDAS disease in my spare moments between trips to the grain elevator. Perhaps this was God’s way of pointing me away from antibiotics and toward healing the gut.
The closer we got to the end of the three weeks of antibiotics, the more I needed to have a next step, and everything in me said that it wasn’t on to more antibiotics.
Fortunately, I have a very supportive husband. He gave me lead to try anything, crazy as it might seem, to get our daughter back.
We tried Homeopathy first. I tried to believe it was helping, but it didn’t seem to do much, if anything. But it was hard to admit that we’d just thrown away all that money for nothing…so I’m still saying it helped….some. (That’s my story and I’m sticking to it. ;))
Then I came across Camel Milk and the Paleo Diet (via an iridologist who put us on a concoction of unknown herbs.) I’m not sure if the herbs helped my daughter, but they did seem to help me with my gut issues, still suffering since my antibiotic experience. But I believe the best we gleaned from him was the Grain Free / Paleo Diet.
The Camel Milk was another big step for our daughter. They call it “The Poor Man’s IVIG.” It works to reset the immune system and heal the gut. It seemed to us that she was so much better, it was hard to ask for more, but there was still a missing piece. It wasn’t until we switched her to Donkey Milk, and she said “I love you, Daddy” for the first time since PANDAS onset, months before. My husband cried, and then he said, “Keep ordering the donkey milk, I don’t care how much it costs!!!”
Please read “Our Protocol” for more details about what we’ve done and what I feel is important for our daughter’s continued health.
Please feel free to comment and share what works for you. I hope this can be a place of encouragement and blessing and shared Momma wisdom! You can also join the Facebook Group “Donkey Milk for Health” for updates and to share your questions and successes with Donkey Milk with others.
God bless you and your little ones!
For more information and research on Donkey Milk, you can read more in my post “All About Donkey Milk.”
This blog is written by an anonymous mom. PANDAS disease is ugly. It’s practically unheard of, but it’s not rare. 1 in 200 kids has it. That’s right up there with childhood diabetes…but my pediatrician had never heard of it. This leads me to the question, how many kids out there are misdiagnosed, drugged for “behavioral issues”, OCD, schizophrenia, ADD, Autism, ADHD, Anorexic, or taken from their “bad” parents by well meaning doctors, teachers, and lawyers who don’t know about PANDAS. How many parents are searching for answers every night, in silent agony over losing their child, and have no one to talk to, no one who understands. This blog is for those parents. Those doctors. Those teachers. But mostly, it’s for those children. The ones with the fear in their eyes and the haunted look. The chapped and bloodied hands from washing incessantly. The lost childhood.
Lord, multiply this, share it with those who need it most. I don’t have time, or resources, or knowledge to get it into their hands. If it will bless them, let this reach them. In Jesus Name I pray for each hurting child. Amen.
This blog exists for informational purposes only. Posts should NOT be regarded as medical advice.
No author or commentator shall be liable for advice given.
It is every parent’s responsibility to determine whether camel milk, donkey milk, specific supplements, the ACC protocol or other biomedical interventions are appropriate for their child.
Furthermore, dosing for vitamins and supplements needs to be tailored to an individual’s needs with the help of a professional.
Thank you for reading the blog, please share it with those in need of hope!