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  1. Same worries, jsl. My son is on azythromax 250 daily and has been since May, with the exception of June, July and half of August. His innitial onset was the summer of 2017. He had two 10-day courses for active strep in thr fall, which was how long it took for his pediatrician to wonder if his sudden symptoms might be strep related. From that point it was another 5 months to find and see g a PANDAS specialist (also a more conservative MD). He was given a 30-day course of antibiotics. Following lab tests that showed high strep and myco, he was put on longterm antibiotics. He will be retested in January, and if the levels are good, he will move to a prophylactic (I assume just a few days a week) until the end of the school year. If all is still well, we will attempt to go off in the summer. Good luck.... these decisions are scary.
  2. 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.
  3. My son started CBT for OCD and tics (using replacement techniques for tics) at age 8. He sees a pediatric specialist and it has helped him a lot.
  4. 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?
  5. My son (who just turned 9) had a very sudden turn in behavior in June 2017. It wasn't discovered until October that he had untreated strep. We treated with two rounds (the first 14 days, which didn't kick it, and the second 10 days ) of antibiotics. He finished the second course in mid-November and has gotten steadily better and I would consider him to almost be back to his "normal" self since the end of December. His second antibiotic was Cephalex and he was unable to stay asleep for more than a few hours on most nights during the entire duration. We assumed it was only that, but he's had insomnia off and on ever since the end of December -- even though all else is good (knock on wood). While melatonin will get him to sleep, his problem is staying asleep. I give him melatonin if he wakes up and can't get back to sleep in 15 minutes. This is more helpful than at bedtime for us, though I've used it then too. He seems okay during the day despite poor sleep. I feel bad for him though and his CB-therapist said that poor sleep will take it's toll in school. We are going to get a sleep study. Not sure what they can say or do. His sleep routine is consistent and considered good hygiene, he doesn't use electronics after dinner and only sometimes watches TV and never more than 1/2 hour (unless we are watching a movie on the weekend or something), he is physically active most nights. If I get any insight or good ideas from the sleep study, I will let you know! Good luck.
  6. My kiddo got one. I waffled around about it for a few months, though.
  7. hi... our 8 year old son had two 10-day courses of antibiotics in October and early November. It took a good four weeks post antibiotic, but he also has nearly returned to his pre-infection state. His psychologist said that quick onset and worsening (he always had mild transient tics) and the quick improvement of OCD/anxiety/ADHD/tics isn't the normal M.O. for those conditions. Like I said, we did two courses of antibiotics. He seemed to improve slightly after course one, but a re-test culture was positive for strep, though he didn't have a sore throat or wasn't "sick." While his focus is back, most ocd issues have resolved and his tics are gone, he has a few things that haven't resolved: periodic insomnia and a refusal to eat food with artificial colors or ingredients (that was an OCD thing that cropped up--at least he's cutting out bad stuff, right?). In his flare, he also had trouble transitioning and couldn't focus during transitions and would make a lot of noises during the time. I think his therapist really has helped him deal with this type of behavior and other OCD issues. At his worst, the therapy really wasn't effective, but on the ramp down, I believe it has been super beneficial. I hope that if he flares again that it will help lessen the severity of the adhd/ocd/TS. We've been seeing a CBT therapist weekly since the beginning of October. I would ask for a follow up throat culture! Just to be sure.
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