GF diet helped, but then stopped. Input?

[O_Bear]

My son had his first PANDA symptom flair (upsurge in severity and frequency of tics and sudden onset of OCD/ADD/anxiety, behavioral regression, moody) in June 2017. He didn't get a blood draw for strep until October. It was positive. We treated with a 10-day round of antibiotics and swabbed for strep 2.5 weeks later. It was positive. We did another 10-day course, which was complete in mid-November. He improved a lot--but not fully--and has had several negative throat cultures. I should note here, that his doctor recognizes that an untreated infection can cause neuro problems, she treats using strep protocol.

I tried a month-long dairy free diet in November with no change upon deletion or reintroduction. I did the same with gluten in January. Every single tic and symptom he had completely went away within three weeks. His psychologist was blown away. I was stunned. He was happy for the first time in months and felt "normal." He was delighted and didn't even mind the restrictions. We kept him off gluten until mid-February. We reintroduced it and everything came back within a week, not to the point of the initial flair, but he was ticking, couldn't concentrate, was very moody/somber and his ocd came back. I eliminated it again, figuring that I found a huge trigger for him. This time, it doesn't seem to make a difference. he's been GF again for well over a month. I am not sure he has improved much at all. maybe his tics are a little less. Would it be worse if he was eating gluten? I don't know! He said it may or may not be helping. He can't tell. He did have a cold in late February (and had a strep test, just in case -- was negative).

Any thoughts?

[bobh]

I am so sorry that you had not received a response to this question.  I myself didn't happen to notice it over the last week even though I am on briefly a few times a week.  Has he changed over this past week?

My first thought is that perhaps he has another trigger that he was exposed to at just the right time.  How far-fetched that theory is depends on how long you left him on the "re-introduce gluten as a test" before you took him off it the 2nd time.  If that was only for a day or two, it almost seems like too much of a co-incidence.  It would still be possible, but it is a wild enough co-incidence to put doubt in my mind.

Then the other possibility I draw from my pharmacist sister, who says that she often has patients that try a drug (we were talking about SSRI's at the time, so I am not sure how broadly this brush paints), get good improvement from it, then after some time (months, I think), get tired of its side effects and go off for a while.  Then, when they want to try it again because of the symptoms, they find it doesn't have the same effect as it did the first time.  This is common enough that she hears about it regularly.  Who can understand the mechanisms involved in that?  If a food has an effect on neurological/mental illness symptoms, then can it act similarly to a drug that has a neuro effect?  It seems plausible to me, but like I say, who can explain the details of that kind of interaction?  This theory offers no obvious next step.

[O_Bear]

 

Bobh... Thanks for your response. I am stumped. With the exception of those 7 days of reintroducing gluten in mid-February, he's been GF since Jan. 1. He is still ticking and experiencing OCD (not anywhere near the level of June-November, but it is definitely there and effecting him).

He did two rounds of antibiotics in the fall, with the last ending in mid-November.  He seemed to start to  improve in the last week of December, though not to 100 percent. His gluten elimination diet started the first day of January. Everything was gone by mid-January ... new tics, old tics, anxiety, concentration issues, near constant hopping, fear of certain foods, but most importantly he acted like himself and smiled and felt good for the first time since this all started in June.

Maybe the timing of the  elimination diet just went perfectly with a fall of strep antibodies (due to antibiotics) and he was just going to get that good, regardless of his diet. But It seems very coincidental that it all came back when we reintroduced gluten. I did take him for a strep test to rule it out. When he went, he had a low-grade fever and a red throat so was fighting something, but the strep test (rapid and culture) was negative. Maybe a combo of gluten and a cold (or just a cold) made him flare. Maybe he is moving from a transient ticker to tourettes and this is just going to be how he waxes and wanes.

You and your sister have a point about medicine (and treatment in general). What works once doesn't always work again.

[bobh]

That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense.  A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.