I have really been struggling with constructing part two of our journey with Pans/Pandas… as those of you who have dealt with these conditions understand, often times it’s one step forward and two steps back, and all along the way I have tried to keep notes, but sometimes, out of sheer exhaustion, and just life getting in the way, I forget. Here’s a link to Part One of our story:“Mommy, Mommy…I Just Feel So Sad!!!”
Because of my own health journey in dealing with autoimmunity, there were several things that I knew that we could do for our daughter right off the bat, to start shutting down that autoimmune response, and start rebuilding her little system, from the gut up. Because her very careless pediatricians over-treated her with antibiotics in the first three years of her life, we now believe that that overuse contributed to the crash of her immune system, the breakdown of her little G.I. system, therefore affecting her brain, (the health of the gut brain-connection is vital. This book is a great explanation as to why. ) and our PANDAS/ PANS savvy pediatrician agreed with us that trying to give her antibiotics now would not do her any favors. So we had to get back to basics if we wanted to get our girl back.
The very first thing that I did back in that fall of 2014, was to really make sure that her diet was on point. We have been very fortunate that she has always been a good eater, I have taught her since she was very tiny that food is medicine, and she has always chosen the healthy things over the junky things, because she understands how much better she feels in general when she’s giving her body good nutrition. So we decided to make the full transition from Paleo to the autoimmune Paleo protocol for a little while, and we took her completely grain free for a couple of months. This step would be integral in calming inflammation, regulating dopamine levels, which due to genetics, are dis-regulated in my daughter. One thing we also learned when looking at her genes, is that she does not process glutamate well. There are many natural food sources of free glutamate, so I greatly reduced or removed all of those from her diet as well. A huge source of glutamate for many folks, in addition to processed garbage food, is eggs. Interestingly enough, my daughter has never really liked eggs. So we took those out. Learn more about how glutamates could be negatively impacting your health here. Learn more about the autoimmune protocol at http://www.phoenixhelix.com/. Eileen Laird’s book, the Simple Guide to the Autoimmne protocol, is priceless. I cannot recommend it enough.
Speaking of genetics, we went to 23andme.com, obtained her genome, and then I ran a report at mthfrsupport.com so we could really see what could be at the root of some of her symptoms, and work with our practitioners to really customize nutrition and supplementation in order to stop some of the defective genes from expressing in problematic ways. One thing to remember, just because you have a defect in a gene enzyme, it does not mean that it is expressing, or causing you trouble. So I would very much recommend when working with a practitioner on this genetic stuff, that you work with somebody who understands that they need to look at the symptoms and the whole person, not just at the genes. UPDATE– As of September 2017, 23andme has made some changes to the genes they offer and it’s up in the air where this is going to go. Some say ancestryDNA is going to be the go-to, but I strongly suggest you research where to get the full genome, with as few exclusions as possible.
The folks at mthfrsupport were very helpful in helping me to find good practitioners, and I also utilized a practitioner list here . Contact a lot of people, ask a lot of questions, and don’t settle until you’re comfortable. From my personal experience, there are a lot of people capitalizing on the popularity of MTHFR right now, and there are many opportunists who just want to sell you a bunch of supplements and have really poor follow-through. So just exercise caution. At mthfr.net, Dr. Ben Lynch spends a lot of time educating us on why are defective genes are much more than MTHFR. If you choose to go down this path, I would very much recommend him as a resource, as well as Chris Kresser, and you can listen to the podcasts at Revolution Health radio. I have also learned a tremendous amount from Dr. Mark Hyman, and Dr. Michael Ruscio. Dr. Ruscio also has a fantastic podcast. So what I did, is I just dove further into all of my learning and self education, which as I mentioned earlier is a path I was already on because of my own health journey. I began to understand clearly what I had not realized for so many years, that part of the reason why I struggled so, is so that I could recover myself and then really know what to do for our daughter. Another great example of how much tremendous growth comes because of the hard times and the struggle.
After we received the diagnosis that, as a mother, I had already intuitively known for a couple of years, I just could not wait to begin doing everything possible in an effort to make up for lost time. I searched for private groups on Facebook so that I could hopefully learn from other parents about what they have done to help their kids to recover. A very dear person contacted me privately to let me know about their homeopath, who specializes in treating kiddos with these conditions, to great success. I immediately contacted them and made our first appointment. In the meantime, I was meeting with different functional medicine practitioners and genetic specialists, and trying to love on our girl as much as possible. I brought her to my acupuncturist who did a couple of treatments that my daughter did not particularly love, but she did start her on some Chinese herbs. They seemed to show a reduction in symptoms almost immediately, she was seeming calmer, there was beginning to be some breakthrough windows where we had our happy, calm, bright daughter present. If you choose to go this route, I would just find a trusted acupuncturist, a very intuitive one, who is excellent at reading the body.
Even though I have attempted to do most things naturally and holistically in the past several years in our family, I had limited knowledge regarding homeopathy. I filled out an extensive amount of paperwork for our meeting, detailing our daughters life basically since conception. My first meeting with the homeopath was very good, I quickly understood that he was an excellent learner and an excellent explainer, as he fielded all of my questions about homeopathy and has experience in healing children with these types of conditions. He put us on what is referred to as a “constitutional” remedy, and it turns out it was an uncommon one so I had to special order it through a homeopathy website. As soon as it arrived about a week later, we began giving it to our daughter one time a day, away from food. Within the next three weeks, she was beginning to have nights where she would sleep through the night, which had not happened in several months, and her emotions were becoming smoother during the day. There was less throat clearing, less anxiety over all, less times of saying that she’s nervous or feeling worried, and we were clearly beginning to see a shift.
From my experience in speaking with countless families with children with these conditions, some of the kids seem to be sick all of the times as well as manifesting the mental symptoms and the ticcing, while others of the kids only seemed to manifest the mental symptoms and ticcing, and the kids hardly ever got sick. Our daughter would fall into the second category, hardly ever raising a fever and maybe only getting mildly congested during cold and flu season. Not too long after being on her constitutional remedy, she caught the cold that was going around school, and she burned a pretty good fever for about a day. This was an excellent sign that her immune system was beginning to come back online. We were so excited! Since that time, she has had a few times where she has run a fever, had other symptoms of illness, and her immune system has done a mighty fine job of getting her better without going into a “flare”. This development was so tremendously exciting to us as a family, evidence of a normally functioning immune system for the first time in years! All of these things are coming together and working! I wanted to shout it from the rooftops!
Before I close, to give you hope, I wanted to share with you the following pictures of her handwriting, from the height of the first flare, to now, after healing. Dyspraxia and dysgraphia can be a common part of PANDAS and PANS. These pictures are progressive over the space of four years. These pictures make me bawl my eyes out with joy!
I would love to hear what you all have done to help your children! Coming up next and in the third installment: imperative changes around the home, environmental factors, how important it is to heal right alongside of your child.
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Follow this link to part three of our story of healing: