1 in 200 kids have PANDAS disease. Whaaaat??? No one is asking “WHY??” Why is this suddenly everywhere? A few years ago, that was the rate of autism, and no one had heard of PANDAS. Now it’s PANDAS, and if things don’t change, I’m guessing the numbers are only going to go up, until PANDAS is a household word. Believe me, I tell everyone about it. My Ob Gyn got an earful while he was doing his dirty work today. He’d never heard of it, left the room while I got dressed, went to his office and looked it up, came back in and suddenly he’s a PANDAS expert. I didn’t laugh. Really. My mission was accomplished, and PANDAS was on his radar. I told his nurse all about PANDAS and our grain free / paleo diet when she asked how I’d lost weight. Maybe she’ll remember….maybe it will help another kid get diagnosed quickly and get out of this nightmare. But back to my point…you can look at what everyone else is doing to treat PANDAS. They aren’t “curing” PANDAS, they’re just “treating” the symptoms.
Western medicine says their “Best Guess” is prophylactic antibiotics everyday until they’re 18 or 21. Why? To supress the immune system so it will hopefully stop attacking their brain. Meanwhile, you’re destroying your child’s gut, not to mention going through antibiotics like candy. How many of you have to switch your antibiotic every six months to one that will work, because your child’s immune system figured that one out? Not to mention the side effects listed in small print.
I know what we’re doing sounds crazy. I know antibiotics and IVIG works for some. Some have to resort to anti-psychotic drugs to keep their child from harming themselves or others. I’m NOT judging you. Bless you, PANDAS parents….you do whatever God is leading you to do to save your child from this awful disease. And you don’t let ANYONE make you feel rotten about it. Least of all me. Really. I get it.
BUT, if, just if, somewhere deep down in your soul, you just don’t feel like drugs or IVIG or antibiotics is going to cut it for you child, then please start looking at what is working for others with autoimmune disease. It’s all autoimmune. The body is going whacky, attacking itself. If this Autoimmune Paleo diet is working for Hashimoto’s (autoimmune disease), check it out! If Camels Milk is helping with Krohns Disease (autoimmune disease), check it out! If Donkey Milk is healing digestive issues, check it out! If essential oils are being used for autoimmune disease….check them out! Get to the source of the problem, rather than covering it up. I’ve read some heart breaking stories from parents of adult PANDAS. ADULT PANDAS. Whaaaat???? I thought this was a childhood disease? Why aren’t they all magically cured at age 21???
I’m sorry. I don’t mean to offend anyone. Or give you one more thing to worry about. Just read this. He says it much better than I could.
“I recently participated in a group discussion with a conventional doctor, a rheumatologist, and patient with an autoimmune disease, and one of my patients who was cured of a complex autoimmune disease by addressing the causes.
The focus of the other doctors, however, was on how to suppress the inflammation with medication, not finding and treating the cause. Functional medicine is a different way of thinking about disease that helps us understand and treat the real causes of inflammation instead of finding clever ways to shut it down. Medicine as it is practiced today is like taking the battery out of a smoke detector while a fire burns down your house!
Autoimmune conditions are connected by one central biochemical process: A runaway immune response also known as systemic inflammation that results in your body attacking its own tissues.
When my patient described how he cured his autoimmune disease by finding and eliminating the causes of inflammation in his diet and environment, it was dismissed as a “spontaneous remission.” In the face of a paradigm-shattering medical case, these doctors were hardly curious and quickly dismissive, describing what was shared as anecdotal.”
Read the rest here. Someone needs to tell this guy about camel / 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!