I know I suck at updating this blog. I own that. I wanted to outline a few things that seem to be working nearly across the board in several forums weeks ago, but life then happened. Before I do that, however, I want to share something else with you.

Over the last several weeks, I have spoken to no less than six separate people who believe they are dealing with an autoimmune-induced encephalopathy in their child or a child they know intimately. Just let that sink in. I am not a doctor. I am not an expert. I am just a parent who has been forced to do a shit-ton of research. (Truly. That’s an understatement. It’s the education I never thought I ever wanted.) And because I have shared our journey, I have had SIX people in the last few weeks contact ME to see if I can help.

Why? Because they are STARVING for information. Because doctors are too short-sighted to accept a diagnosis they cannot locate within their precious DSM. These parents know there is something wrong with their child. They see it when the switch flips and their once happy-go-lucky child suddenly transforms into Mr. Hyde. They watch their child writhe with anxiety. The psychiatrists tell them to accept a psychiatric diagnosis, take their prescription, and go on their merry way. The more progressive MD’s might prescribe a round of antibiotics based upon a positive strep culture or some other positive test result. The others will likely place a note in your child’s chart to the effect of, “mother believes child has a fictitious disorder called PANDAS.” Seriously. I couldn’t make this stuff up if I tried. Just to be clear, I am not saying these things to bash anyone, but these are the stories I am hearing from parents who are desperately seeking answers and instead, getting doors slammed in their face.

Just the other day, I had a woman say to my face that Lyme is extremely rare unless I was bit by a tick. (Note: I don’t believe Little Man or I have Lyme, but this is type of mantra people like to argue) Also of note was the fact that she had ZERO experience with Lyme, was not a doctor or a nurse or any sort of authority on the subject. But, she felt the need to puff her chest and set me straight because I didn’t “know what I was talking about.”

Between me and my fellow PANDAS (and Lyme) parents, I wanted to tell her (politely) to STFU. I didn’t. But the sentiment was there.

I do not claim to have all the answers. Hell, I don’t claim to have ANY answers. What I do know is that last year, we were chained to our home with a child who would only watch t.v. and eat bean burritos. If he wasn’t hitting or kicking or spitting or screaming, he was either sleeping (but only about 6 hours a night) or zoning out in front of some electronic device. I will share what has worked for Little Man and what hasn’t in the hopes that it might help steer others to further healing. Every child is different and well, you know the rest of all the disclaimer mumbo jumbo.

The Good:

  1. The most recent gains we have seen were with homeopathy. The keys for us were stramonium and tuberculinum. Homeopathy is however, very patient specific. I would highly recommend consulting with a homeopath (as we do) prior to dosing.
  2. Occupational Therapy. If you are unfamiliar with how primitive movement stimulates the neural pathways, I would recommend some further reading. Many simple movements can assist your child in building new neural pathways to assist in behavioral progress. Little Man has made great strides in recognizing his emotions and being able to discuss them without going into violent rages.
  3. LEGO. Yes, LEGO. My house is overrun with it. I am learning to speak brick lingo. We have spent no less than a few thousand dollars in the last few months. There are several articles on LEGO therapy (see one here) and it is even mentioned in the documentary, A LEGO Brickumentary, which is widely available. Now, I must mention that only six months ago, it was difficult to get Little Man interested in anything at all for any length of time. He might become interested for a few days, but then his enthusiasm would subside just as quickly as it had emerged. He says he loves LEGO because he can focus on it, there are no words to make him confused or frustrated (he had sudden onset dyslexia and is still struggling with this), and he loves looking at his completed models. We watched his confidence increase, his sociability improve (because he would talk about LEGO to just about anyone), his fine motor skills improve greatly, and his ability to focus increase. So yes, we are big fans of LEGO.
  4. GABA, Glycine, and L-Glutamine. These are all neurotransmitters and they seem to be helping quite a bit with cognitive function.
  5. Diet. We were on a strict autoimmune paleo diet. I admit I have eased on this a bit. He does, on occasion, have a gluten-free item and I have allowed him a few staples made with ancient grains. We will likely get back to the autoimmune paleo protocol at some point to complete healing of his gut.

The Bad:

  1. We have been using Bioray products and they have been excellent (I will detail in another blog), but for some reason, the Shine formula was a bit of a nightmare. This could have been just a fluke, but I thought it worth mentioning. Little Man had an immediate stomach ache and was quite upset with me for “poisoning” him.

The Ugly:

  1. I know some kids do really well with Biocidin Liposomal Formula. We did not. It was an absolute, honest to goodness, nightmare. Little Man began having massive hallucinations, extreme panic attacks to the point of not being able to breathe, and intense phobias. It was the only thing we added at that time and consequently, when we took him off, those symptoms lessened considerably.
  2. I must mention that we are currently dealing with a viral or bacterial exposure. It is taking it’s toll, for sure. Little Man is expressing symptoms (many kids with PANDAS do not), so I am hopeful the antibodies will do their job and then be on their way. Whatever this is, it is particularly virulent as my husband (who is never sick) has had it for nearly ten days.

So, that’s the long-awaited treatment update. We do have another appointment with a new doctor in a few weeks, so things may shift. I will keep you all posted.


Until then, hugs and healing,

Mama Bear