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1 in 200 children has PANDAS disease. But our big city pediatrician had no idea what it was. If you think your child may have PANDAS, don’t stop searching until you find a doctor that can help you.
Here is a list of detailed symptoms at PANDAS network. Your child may not have a “classic” case with every symptom listed here. I’ve talked to mom’s who’s child’s only symptom was constant throat clearing (his “tic”.) Our daughter had a “classic” case, with nearly every single symptom, and sudden, acute onset. The technical list includes OCD, restricted eating / anorexic behaviors, tics, anxiety, uncontrolled emotions, depression, irritability, rages, aggression, age regression (including baby talk), loss of handwriting, math and academic difficulties, sensitivity to sounds, touch, feel, sleep difficulties, hyperactive, choreiform movements (uncontrollable movements), hallucinations, severe separation anxiety, dilated pupils, urinary problems, fight or flight response. The list of symptoms is so clinical and dry, it fails to mention the horror in their eyes when you try to hold them, or the terror when you try to stop them from washing their hands after fifteen minutes of obsessive hand washing. In our case, within a 24 hour period, our daughter changed into a different little girl, one we had never seen before. For more of our story, you can start at the beginning here.
If you suspect your child may have PANDAS or PANS or lyme disease (our lyme test came back negative, but many children with PANDAS or PANS also have other underlying infections. Ask your doctor to test for lyme too. You need to know what you’re dealing with so you can fight it with every resource you have.) Here is a list of tests to get you started.
Now, I highly recommend joining these facebook groups of momma bears. There are amazing women on here with a wealth of hard won knowledge, and they’re sharing what they know with other moms in the fight for their precious little ones. Post your question and you’ll get answers from mom’s who’ve been there. Ask for doctors in your area. Post pictures of rashes. Vent. You’ll have someone there who gets it. Strangely enough, I’m sure I could sit down for coffee with these facebook mom’s and talk for hours, and never feel uncomfortable or judged. (At best, your pre-PANDAS friends won’t get it, at worst, they’ll think you’re crazy, or your kids crazy, or you’re a bad parent who just needs to discipline your out of control kid.)
Facebook Groups to join
Healing with Camel Milk (non specific to PANDAS)
Healing with Donkey Milk (non specific to PANDAS)
The Oily PANDA (this one has good info, but they only allow posts about Young Living Oils, which I don’t agree with, personally. I just think anyone should be able to post whatever works. It’s about healing our kids, not selling your brand. Just my 2 cents.)
Most of all, ask the One true healer, Jesus, to heal your child and lead you every step of the way. Blessings!
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!