Short story: We used Entergam (http://enteragam.com) to heal the gut, together with Gutpro probiotics (http://organic3.com/gutpro/) and Nystatin to treat yeast overgrowth. It took 12 weeks and we used a MAPS doctor in Austin, TX.
Long story: For those that want the details of what a long strange trip it’s been (and I don’t think the journey is completely over), here is the timeline. While there are other parts of the story that I could flesh out, I have tried to include most of the details that relate directly to his salicylate intolerance. There are lots of ways to heal and many means to an end, but this is my son’s story that took place over the past two and half years. I'm sorry this post is so long - telling the story has been cathartic for me!
We started Feingold diet in early Feb of 2014 of my son’s kindergarten year for ADHD symptoms & emotional lability and we hit baseline quickly and saw immediate results with basic S1. When I purchased our membership I thought I had just paid out money for some sort of crazy scam because I had never heard that food could affect behavior. Luckily, I was drinking wine and made the purchase anyway! One of the unexpected results was that he stopped scratching his legs/buttocks at night in his sleep. No doctor had been able to tell me that it was the salicylates! His sleep and demeanor improved tremendously. His play therapist, who previously noted that he would need ADHD medication in school, was amazed!
About 3 months after starting Feingold, in May of 2014, he got strep throat, and we were chasing baseline after that. In September of 2014 we went to see a naturopath, who told us to cut dairy, soy and sugar at the very least, and gluten if we could. So we cut those out in October of 2014, although we waited to cut gluten. However, I had noticed that he had some mild tics, such as blinking and gulping. We removed even more S1 fruits and veggies and the tics stopped. Over time he had become more and more sensitive to salicylates, and he would even start to scratch at night again with tiny amounts of S1 foods. Three drops of pineapple juice made him scratch for three days! We removed even more salicylates per the Failsafe diet at the end of December 2014. He responded great and we finally fit baseline again - behavior and disposition was great and no tics! However, his diet was severely limited, and by this time he was doing a GFCFSF diet with a list of less than ten vegetables and only one fruit - bananas.
While he seemed to be at baseline behaviorally, over that year he had developed some OCD behavior, which I had normalized as “quirks.” He had great hygiene and always washed his hands before eating. I thought I had done a great job as a mother! Lol. But over 2014, things got worse, and he would not eat his lunch (a painstaking task to prepare with FG GCCFSF, no cane sugar, low-sal foods!) because his friend at lunch “breathed on it” or because the teacher would not let him go wash his hands again (as he had touched a pencil after they had their bathroom break). At home we would go through 4 to 5 forks at dinner, because they were not allowed to even touch the table. And then we started to notice how he would hold one hand in a fist by his chest after washing his hands - this was his clean hand that he could use to eat with. He was also reluctant to give hugs and would do so with clenched hands (to everyone except me). And although he had been wiping himself on his own regularly, he reverted to wanting help most of the time - and then all of the time. He also had anxiety, especially when the weather was bad. He didn’t even want to go to school when it was raining. Not to mention occasional rages and spurts of baby talk (which can be a form of regression). Somehow, though, we were able to normalize some of these symptoms, and for the other symptoms that I knew needed to be treated, I wasn’t even sure where to start. I was relatively certain that therapy was not going to help his OCD and anxiety - we had already been to a play therapist and worked on the weather anxiety and it actually made it worse! I had read about PANDAS on boards such as this one, but dismissed it because my son’s case seemed mild in comparison and I wasn’t prepared to spend big bucks on a specialist and then be told I was a crazy Munchhausen mom! I was already largely guarded in what I would tell people about his diet. It’s hard to promote Feingold when your kid, albeit not taking any ADHD meds, is eating a FG GCCFSF, no cane sugar, low-sal diet!
Then in early February of 2015 he came home from school and was in a rage, throwing things wildly around the house. He hadn’t had any new foods, so I checked his throat - strep for sure! I pulled up the PANDAS website (http://pandasnetwork.org), and reading through it again. I was now convinced that we were definitely dealing with PANDAS.
So then we decided to seek out the PANDAS specialist. Luckily there was one in Houston. We were able to get in to see him and he confirmed that we were indeed dealing with autoimmune encephalitis. My son’s body was mistakenly attacking the basal ganglia portion of the brain while trying to fight infection. He noted that we had had mold exposure, and that this was a potential catalyst, as it creates holes in the intestines. He didn’t have experience with salicylates, but he was adamant that food and gut health had everything to do with healing the body. With a leaky gut, food particles escape the gut and get into the blood stream where they shouldn’t be, igniting an autoimmune attack on the food particle. Due to molecular mimicry, some of these foods look like parts of your body. Gluten proteins, for example, have a similar amino acid sequence to the thyroid. In attacking the gluten, the body mistakenly attacks the thyroid.
The doctor ordered lots of blood work. He put him on amoxicillin, probiotics, folate and ordered a special tonsillectomy for May of 2015. After the tonsillectomy we did a food iGg test, and discovered he needed to cut out eggs as well (and dairy, soy and gluten, which we had already pulled). By the end of July of 2015, two months after the tonsillectomy/adenoidectomy, the OCD and anxiety had almost completely vanished. My son would even eat food that had fallen on the floor!
However, the foods he was eating had not changed. We were still doing FG GCCFSF, no cane sugar, low-sal foods. We weren’t far from Paleo, so we tried AIP with his restrictions for almost 3 months. We tried enzymes, but those too leaked out of his gut and cause him to rage. He was taking strong and expensive probiotics. He was drinking some bone broth. He still could not reintegrate foods. He even had issues if he ate frozen organic green beans, although he tolerated fresh organic green beans. Every small infraction would result in 3 nights of scratching and lost sleep. His PANDAS doc was even doubtful that he ever would be able to tolerate salicylates again. I, however, was not prepared to have my son go through the rest of his life without fruit. Of all of the fruits in the world, he only tolerated bananas (not even pears!) and was eating up to 6 a day in smoothies, etc.! I was determined to spend the summer of 2016 working on a solution.
I began to research more and spend lots of time on forums, FB and PubMed. I compiled a list of docs, and finally decided to do a biomed approach and found a MAPS doctor in Austin who worked with children and seemed to connect food with health and behavior. We made the trip in Austin in late May of 2016. We did a stool test, a genetic test and discussed a list of supplements to add in. She reiterated that the gut needed to be healed and prescribed Enteragam (http://enteragam.com) , telling us that although this was designed for IBS, it is a gut-healing medicinal grade food supplement. She told us studies said it took 12 weeks with two packets/day to heal the gut. He has been taking the Enteragam since them. We didn’t notice any changes, but continued to take the medicine as prescribed. We have also been treating yeast overgrowth that showed up on his stool test with compounded Nystatin and have been using GutPro probiotics.
Last week was Week 12 and we had a family barbecue. My son was adamant in trying some fresh pineapple. He is usually so scared to try new foods (because of all of the bad experiences in the past) but he really wanted to try it, so I figured something might have changed and I let him have a small tidbit (which is S2 btw! even though he can’t even handle most of S1!). I got our antihistamine lotion out and kept it by the bedside anticipating the scratching that night - and it didn’t come! Since then he has tried (in large quantities): strawberries, blueberries, blackberries, watermelon, lemon, coconut, cantaloupe, grapes and more! Not to mention all the veggies! Over time I came to realize how important food is for the immune system, but my son was so limited. I feel like the great curse has been lifted. I was in tears when we found Feingold because I couldn’t believe that it had been the food, even though we started FG eating a bunch of (dye-free) processed sugar and junk! I am in tears now because we have finally healed his gut and have learned how to eat a whole foods diet. Now he can finally enjoy all of those wonderful foods!