Amy Joy Smith is a Nurse Practitioner specializing in Functional Medicine at Open Medicine Institute, in Mountain View, California.
How did you first learn of PANS/PANDAS and what motivated you to begin treating children with PANS/PANDAS?
My son was sick and developed PANDAS. You can look at my blog for the full story: http://lancefundraisingforhealth.blogspot.com. He came down with PANDAS July 2006 when he was 10 years old. It took me over three years to figure out what it was. There was very little information around at the time. Finally in winter 2009, I saw something online about tics and strep and PANDAS, so that is how it all came to be.
Do you ever treat children who did not have an abrupt or acute onset, and if so, do they respond similarly to children who did have an abrupt onset?
Every single child is a story unto themselves. There is no “they.” It is an extremely unique illness and I think that is part of the issue for people to understand what it is, how to recognize it, because it is the most heterogeneous group of kids. They happen to have something that is causing brain inflammation in an acute manner. It could be infection driven, diabetes, lupus, toxins, Lyme, mold exposure, environmental, pesticide exposure. There are a zillion reasons why a child would have a change in their neuropsychiatric functioning and then some kids have it onset so young that it is all retrospect. That is an issue too.
Even with us, there were times before the big, big break that he had these transient episodes of weird stuff but it always for the most part resolved. We did a ton of work on sensory integration. It seemed to get better but did it get better just because it was an early PANDAS flare that was ultimately going to self resolve or because he did OT? It is hard to say. Some kids have been sick for a very long time and it is hard to get them better, regardless of whether or not it was an acute onset, so that is the only way I can answer that question.
Have you had any patients who had been diagnosed with autism who ended up actually having PANS and had some symptoms remit with treatment?
I would never say that autism is PANDAS. I think personally autism is epigenetic injury from something. I do have a substantial percent of children on the autism spectrum in my practice. Because they already have immune disruption, some enzymatic problems, probably a large infectious burden, a weak blood brain barrier, they’re going to be more likely to be susceptible to PANDAS.
I do have one child who completely lost his autism designation. No more aide at school. No more services. I have some older children that really look like they have autism but they can’t possibly have autism because it developed much later in life. One that I spoke to yesterday, for the first time she could actually talk instead of shrieking, hiding, and perseverating. Then there is the group of children with autism that develop PANDAS or PANS but nobody listens to them because they say “every kid with autism has OCD.” No. That is not true. If you treat child that has autism for the PANS/PANDAS, it is possible that the PANDAS type stuff can go away, yes. Diet is everything!
Have any of your patients lost their diagnosis of bipolar disorder, oppositional defiant disorder, mood disorder-NOS, or Tourette's, with treatment of PANS?
How old was the youngest patient you've diagnosed with PANS? Have you treated any adults successfully?
Yes, I have treated several over the age of 18 and yes, they’ve had relief from symptoms. We’ve had some successes and some failures as well too. It is hard to get people well without diet. For kids who are going out and eating McDonald’s every day, it becomes really difficult to get that kid better with an herb. It becomes a dilemma. Not that it isn’t possible.
The youngest I suspected was 9 months. Something happened to them at that age.
What percentage of your patient population requires IVIG and how often is more than one round of IVIG necessary?
Most kids I’ve used IVIG with have had one. The next amount is two. I am a big believer in IVIG for PANDAS. Maybe one quarter of my kids have done it. I would like to say more. I am not a big believer in routine IVIG with another one and another one. Every time you do it, it stirs the pot, it moves things around, so I have to have a really good reason to repeat the IVIG. Most kids if you clean up the gut and reduce infectious triggers ahead of time, and try to do some other good work on their bodies, then I am a believer in one and done. It works for months. For kids who are a lot older, have had it a long time, kids on the spectrum—they might need it more frequently when getting started.
What led you to study the PK protocol as a treatment for PANS?
I came to an inquiry about cell membranes years ago. By the end of 2010, I was treating kids for PANS. I think about PANS and PANDAS all the time. We know it is a process and a misdirected immune response. That means you fix the process and it should get better but what about the kids who don’t get better? Is there a remnant in the nervous system that creates an injury? I started to think it must be at the level of the cell membrane, oxidative stress or in the fats of the nervous system because it is all lipids based. I started using oral phosphatidylcholine and I had a boy, an older boy who had been treated for two years of severe PANDAS with a big onset at 12. He was truly showing autistic features and before he was a completely NT, beautiful, super intelligent boy. He was very sick and lived far away so we decided to do nutritional work. I put him on eight capsules of phosphatidylcholine plus some greens like spirulina, just to get him started. In two weeks, that boy was talking in sentences for the first time in two years. I am not exaggerating. I have had other stories with oral phosphatidylcholine that have blown my mind. Ultimately that led me to the PK protocol. Patricia and her husband Ed Kane had done the research and in March 2016 I spoke at an integrative medical conference and Patricia was there. At the end of the talk she came up to me and we talked and that’s how it started. I had been tracking her for years! The farther down that path I’ve gone, the more I keep coming back to it. What keeps working is the lipids. It is so exciting!
What is your advice for parents of children who have PANS/PANDAS?
Never give up on your child. Never, ever, ever, ever, ever give up on your child. I really believe no matter what the state of somebody, no matter how long they’ve been sick, they can get better. I believe that just because they haven’t been able to find good care wherever they are should not stop them from seeking it out. Don’t give up. Keep working on getting your child better. Also, the dietary piece. They have to look at the dietary piece. While they’re waiting, and even if they can’t get into anyone within 10,000 miles, they can clean up their diet. That is a starting place and they can get a ton of healing just with that!
~A huge thank you to Amy for allowing Anna Conkey to interview her.