Strangely, after we got our Haley back, I stopped feeling the need to blog about it. Now I have people asking me how we did it, so here it is.
First, if there is an active case of strep, or an underlying case of strep, please, please, treat the infection with antibiotics, kill the strep, then deal with the autoimmune issues. We followed doctor recommended 3 weeks of hard core antibiotics (cefdinir). Ask your doctor what will work best for your child. I cannot stress this enough, DO NOT MESS AROUND WITH STREP! (Rheumatic Fever / PANDAS disease…bad stuff! Kill the buggers, ASAP!)
After the 3 weeks of antibiotics, our daughter was somewhat better, but she still wasn’t back to normal, not by any means. In fact, one of her “ticks” surfaced AFTER starting the antibiotics! We chose not to go the traditional route of prophylactic antibiotics every day until she’s 18 or 21 (the NIMH experts told me this is their “best guess” for how to treat PANDAS, to suppress her immune system and trick it into not attacking her brain.) Instead, we took her off of ALL antibiotics. This is what worked best for us. Take it or leave it. Pray before you do ANYTHING. Ask for God’s guidance for your child and your family. Each child is unique.
This is what we finally landed on after jumping down a lot of expensive rabbit holes….you can read back through previous posts to see what else we tried on the way.
Our Top Essentials for Life Without PANDAS.
- PRAY. Did I mention that? There is no way I would have found the right path for our daughter without His help. Giving God the glory our baby is back, and through natural healing gifts He gave us…so glad the camels and the donkeys made it onto the ark. 🙂
- Donkey Milk (mixed with maple syrup) For us, this replaced the “poor man’s IVIG” Camel Milk
- Grain Free / Paleo diet (you may try the Autoimmune Paleo Protocol if extreme case, also called AIP)
- Epsom Salt Baths (for magnesium deficiency) A LOT of epsom salt baths.
- Herbs from an iridologist…this may not have been necessary, but it did seem to help for a while (we are no longer taking these, and she’s doing still doing awesome!
- Black Cumin Seed Oil and /or Fermented Cod liver / Butter Oil for inflammation
We started the camel milk, the grain free / “modified” autoimmune Paleo protocol diet, and the iridologist’s herbs at the same time, so it was difficult to determine which one was working the best. Haley was soon back to her normal, happy go lucky, creative, drawing, sculpting, building, singing self. However, she still lacked something…when we decided to make the switch to Donkey Milk, it was like the last piece of the puzzle fell into place. Finally, months after PANDAS onset, she said “I love you, Daddy.” He cried, and said he didn’t care how expensive it was, keep ordering the donkey milk! Then we called her Grandma, and she said, “I love you, Grandma”. I got on the phone and my mom said, “That’s the first time she’s said I love you since she got sick!” I told her we had switched to Donkey Milk. We’ve since stopped taking the herbal concoction. (It irritated me that he refused to reveal what exactly he was giving us, and it seemed he forgot something or mixed something up every time we ordered. Not exactly a confidence builder.)
I know it sounds crazy, but this is what works for us, and we don’t mind being weird if it means having our little girl back. I’m no doctor, I’m just a mom who loves her little girl, prays for her, and wants to share how God has blessed us and hope to bless and help others through this journey.
Getting started with Donkey Milk
For the scientific, researcher types, you’ll want to read all about why donkey milk works and it’s composition and immunological properties in my post here “All About Donkey Milk.”
We have been getting our Donkey Milk from a rancher up north, but when it became apparent that Donkey Milk was essential for our daughter’s health, we decided to get our own donkeys and milk them ourselves! Please contact us if you are interested in placing an order or getting on our waiting list in the United States. If we have a waiting list, we will put you in contact with someone that can help you get started ASAP. You can also join the “Donkey Milk for Health” facebook group for a list of donkey milk providers worldwide and a forum for questions and answers, or contact us to order donkey milk from us or we will refer you to another donkey milk farmer.
You may want to contact Dr. Hinkle at camelmilkusa.com for a specific plan for your child. She is a huge fan of camel milk, but you can request her recommendations on donkey milk. We started with 1 oz, 3x a day, for a few days and worked up to 4 oz am and 4 oz pm for our 6 year old, 45 lb child. (Each person is unique, please research yourself and start slow!)
Getting started with a Paleo / Grain Free diet
Recipes for the AIP (Autoimmune Paleo Diet): Against All Grain. Here I put together a weeks worth of recipes to get you started. And here is a blog written by a mother of a PANDAS child, sharing their journey and how they do Paleo.
We love Plan to Eat. (This is an awesome tool for planning your weeks recipes, it figures your groceries for you, takes all the work out of meal planning. One less stressful thing on your plate!)
What else we do…in addition to Donkey Milk & Paleo Diet:
I had Epsom Salt baths in the “Extras”. After I read about strep and tics and Magnesium Deficiency, I realized it should be one of our Top 5 Essentials.
For a treat, (and for inflammation) we do Fermented Cod Liver Oil / Butter Oil Blend (chocolate). I know, we used to gag at the taste, but after we went Paleo, this became a yummy special treat. Maybe our taste buds changed after taking out refined sugar? (4/12/15 We may be switching over to Black Cumin Seed Oil for battling inflammation and excessive immune response…more on why black cumin seed works to balance the immune system here and my post on Black Cumin Seed Oil.)
Vitamin B to increase appetite. If your child has the anorexic like symptoms, this may be something to try. It also has Inositol, a natural B vitamin missing in modern diets, which is great for anxiety. AND for mom’s low on energy and stressed to the max, take this too, just don’t take it at night or you won’t sleep. We did capsules of Garden of Life Vitamin B-100, but there may be something better out there…? I empty the capsules into maple syrup (real grade B), and put it in a syringe for the kids. If you or your child have one of the MTHFR gene mutations, you may need to research the type of Vitamin B you take, NOT Folic Acid! Here is an excellent article with more info: “How a Vitamin Cured my Anxiety.”
For maintaining health, we do Essential oils. We have been using Eden’s Garden Four Thieves before and after we go into our public. Also Peppermint Oil (diluted in coconut oil) on the feet and belly button to bring down fevers, for tummy aches, and mommy headaches. (Note: there are two schools of thought on whether to use internally or not. I fall into the “not going to risk it” category. Here’s why we don’t take oils internally. UPDATE: We discovered Eden’s Garden Essential Oils, available on Amazon, and much more economical than some of the other brands. Also, I’ve heard excellent things about Jade Bloom Essential Oils, but haven’t tried them yet…they look amazing and well priced! Feel free to research oils and do what you feel is best for your family, and post your opinions below.)
Phyllis at Rock Creek Herbs in Sapulpa, Oklahoma. She is an Iridologist, and the only one I trust. (We had a not so great experience with a different iridologist.) I’m going to do an individual post about iridology and our experience with Phyllis. Love her. And it’s free to see her, just take a book…there are no appointments, you just wait in line.
A few helpful links…
- For more research and articles about Donkey Milk, see post “All about Donkey Milk”
- To order donkey milk or be referred to a donkey milk farmer near you go here.
- Pandas Network (this has great information on PANDAS and PANS, and how to treat with the standard medical approach and get an accurate diagnosis.)
- The Cunningham Panel from Moleculera Labs is the ONLY test in the world to prove PANDAS / PANS. They test blood work from all over the world and help families get the diagnosis they need for treatment.
- Facebook Group “Healing with Donkey Milk“
- Facebook Group “PANDAS/PANS/Lyme/Tick Borne Disease” (often PANDAS and Lyme or other Tick disease go hand in hand)
- Facebook Group “Oils for PANDAS” I like this one because they don’t push a certain brand of oil, just sharing information on essential oils and PANDAS.
- Facebook Group Recovering Kids / Biomedical Healing
- DAN doctor list by State (DAN stands forDefeat Autism Now)
- The River to Recovery (symptom check and what they may mean)
- The Greater Good Movie (link between autoimmune disease and vaccinations)
- Camel Milk USA (Dr. Hinkle led us to Donkey Milk after the Camel Milk, scroll way, way down the page to the Camel milk/ Donkey Milk study)
Apparently after kids have a bout with autoimmune disease, they can get “new” allergies from their system acting up. Maybe that’s why the Paleo diet is so important to us.
Please join the Facebook Group “Donkey Milk for Health” for more information and sources.
Update: For those battling Lyme Disease / Tick disease or other co-infections along with PANDAS, or for those who choose to be on prophylactic antibiotics at the same time as Donkey Milk, this is a link to our Lyme Antibiotics Protocol and a log of our 6 week Lyme battle with multiple antibiotics and cyst busters, all while trying to keep the gut as healthy as possible with Donkey Milk, probiotics, etc. It is very common for PANDAS / PANS kids to have underlying co-infections (Babesia, Lyme, Mycoplasma, etc.) Until these are dealt with, the immune system will continue to be in “attack” mode (and for good reason!) Treat the infections and / or parasites, kill the nasty buggers with antibiotics, antifungals, herbs, oils, whatever it takes, then heal the gut and work to modulate the immune system naturally. This is also applicable for those taking the IVIG route. Treat the underlying problems first, before re-setting the immune system to baseline with IVIG, otherwise the infections will trip the immune system back into overdrive and you’ll be back where you started.
For a real life view of PANDAS, please watch this documentary trailer for the movie My Kid Is Not Crazy.
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!