Hi Terri!
Welcome to our forum, we're glad you found us and hope that we are able to share a bit that will help you in your search to alleviate your son's symptoms.
First of all, I am wondering what your son's diet was like prior to the onset of symptoms. Was he eating a lot of sweets like M&Ms and stuff? Holiday cakes and cookies? What makes you think it is definitely candida? Was he on a lot of antibiotics as a baby/toddler?
Have you done any celiac/gluten intolerance testing on J? I'm just curious. The results are not accurate if you go GF before getting the testing done (unless you go through Enterolabs). I have read that candida overgrowth is common among those that are gluten intolerant as the gluten wears down the lining of the small intestine and allows for the candida to flourish outside the stomach and intestines. We have candida issues too and we use Threelac. I did look into the SCD after I had already been doing the GFMF casein reduced diet for quite some time. Do you believe that once the candida is killed that your son will be able to begin a more normal diet again or do you believe that he will have to remain on a SCD diet indefinitely? I am very curious as I have only read briefly on it and found it very interesting-- and difficult to follow! (Especially with a 5 yr old.)
So -- now that these tics have come from out of the blue, we've gone back to square one. We've pulled all di-saccharides and poly-saccharides from his diet (starches and sugars) and we're hoping for the best.
Just wondering what he was eating prior to the outbreak? Also, do you know if he has recently had exposure to Strep Throat? There is a huge community of people that see a sudden onset of symptoms after an exposure to strep. Maybe sterlings mom will jump in here, I do not have any personal experience with PANDAS, PITANDS.
Tics we're seeing include - shoulder shrugging (he touches his ear lobes with his shoulders, alternating between the two), shuffles his feet, some blinking, opens and closes his lips, touches his fingers (in a pattern), pats his hands on his legs. He says, "I like all the parts of my body to have the same amount of touches," and seems to want to keep things even on both sides. He's also told me to use a specific hand a certain number of times while loading groceries into the car or turning the pages of books (in a pattern, using each hand equally). Those behaviors have only happened a few times -- and that is what my pediatrician was most concerned about at this point.
We saw a flurry of symptoms at onset too, but they slowly waxed on, only to subside after starting a candida cleanse/gluten reduced diet. Our Tigger had facial grimaces, sleeve pushes, eye blinks, head nodding, and some behaviors like you described that could be attributed to OCD like tendencies. (He had an obsession at the time that he had to completely change his clothes after each trip to the toilet because his perfectly 'clean' clothes were somehow soiled after he used the toilet.) He had a lot of anxiety issues and was very morose at times and explosively angry at others. We too saw many years of digestive problems prior to onset of initial symptoms (intermittent diarrhea, gas, constant burping, picky eating, poor growth.) He also had chronic bouts of infection and was prescribed antibiotics at least two, once three times a year.
Initially, we started him on a special combination of vitamins by Bonnie Grimaldi made specifically for TS. They worked beautifully to help 'knock the top' off of the tics. I believe the vits were taken for two full weeks before we saw significant improvement. We were giving high doses (8-10 capsules a day) and this was disconcerting for us as he was so young. We did call the company and they said the vits were safe in high doses so we continued down this path for quite some time. Good supps for CNS function are B6, Magnesium, and omega 3 fatty acids.
The OCD like tendencies faded when we went completely gluten free in addition to doing the candida diet. At the same time we saw a DAN doctor and discovered that Tigger also suffered from pyroluria, so we began a compounded vit at that time and stopped Bonnie's vitamins. Now after 9 months on a Feingold type, GF-MF and casein reduced we no longer need high doses of vits to keep the tics down and do not see any OCD-like behaviors.
Tigger is still a perfectionist and highly driven kid, but the anxiety is greatly diminished.
Thanks for stopping by. I hope we can learn from each other, and I'm very glad you came!
Caryn
