Trial and Error and what worked best

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 massive dose 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 / or the case of the little girl in Canada who lost all her limbs after just 2 days of untreated strep.)  After the 3 weeks of antibiotics, our daughter was somewhat better, but she still wasn’t back to normal, by any means.  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 5 essentials for life without PANDAS.

  1. 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. 🙂
  2.  Donkey Milk / Camel Milk (mixed with maple syrup) This replaced the “poor man’s IVIG Camel Milk
  3. Grain Free / Paleo diet
  4. Epsom Salt Baths (for magnesium deficiency)  A LOT of epsom salt baths.
  5. 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!)

How we did it:

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 Camel / Donkey Milk

We have been getting our Donkey Milk from a rancher up north, but this weekend we are going to pick up our first three donkeys!!  We are so excited, and I’m slightly petrified….I’ve never milked anything, ever!!!  Please join the Healing with Donkey Milk facebook page for a list of donkey milk providers.  If you are in Europe, there is a farm in Belgium, and one in France.  I’ll try to find their info too.

We get our Camel Milk from Ruben Schwartz, an Amish farmer in MO. Call and leave a message and he’ll call you back. 417-754-1334  Or, look on the Healing with Camel Milk Facebook page, they have more camel dairies listed there.

I’d advise calling Dr. Hinkle for a specific plan for your child.  But be prepared for, a ummm, brusque attitude. We started with 1 oz, 3x a day, for a few days and worked up to 4 oz am and 4 oz pm. Each child is different, she knows her stuff, call her for specific dosages for your child.

Getting started with a Paleo / Grain Free diet

Recipes for the AIP (Autoimmune Paleo Diet):  Against All Grain.  Here’s a weeks worth of recipes to get you started.

Sign up for 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!)

Extras we do…in addition to Donkey Milk & Paleo Diet: 

  1. 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.
  2. For maintaining health, we do Essential oils.  We have been using Young Living Thieves before and after we go into our public.  Also Peppermint Oil for fevers, tummy aches, and mommy headaches.  (Essential!)  I’m looking into Vibrant Blue Oils , and have heard good things about DoTerra as well.  More on these in a later post on our medicine cabinet.  (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.
  3. For a treat, (and for inflammation) we do Fermented Cod Liver Oil.   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…search my post on this for more info.)
  4. And Vitamin B helps 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.  

 A few helpful links…

Alternative Doctor / Allergy Testing

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.  I have not done this, but some get tested by Dr. Caprio

For more about Donkey Milk, see post “All about Donkey Milk

Please join the Facebook Group “Healing with Donkey Milk” for more information and sources.  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!

2 responses to “Trial and Error and what worked best

  1. Hi I suspect my son who is 3.6 years old and recently diagnosed with severe autism may have pandas. I’m so unsure though. How would I test and also are there any websites you recommend which offer descriptions of pandas behavior etc?

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