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Everything posted by Crunchfly

  1. My son's journey with PANDAS started a couple years ago with 8 recurrences of strep one winter. He had been symptom free for about a year and half when he became symptomatic again with a sinus infection recently. That sinus infection was treated with Augmentin and symptoms lessened, but it did not fully clear and he was put on Zithromax yesterday after he started running a fever. Thinking back, this is the fifth sinus infection since December. Does anyone have experience with recurring or chronic sinus infections and PANDAS symptoms (would that be PANS now?) Should we see an ENT? And if so, any recommendations for one in the DC area who is familiar with PANDAS issues?
  2. That was not encouraging. How old is your ds? Mine is 10.
  3. My ds had a rough time with PANDAS a while back, but has been healthy and tic free for about a year and a half. (With the exception of one tic explosion for a few days during a dramatic allergic reaction to a cephalosporin antibiotic...could have been either the immune process or the constant Benedryl for 10 days ). We all caught a cold virus this past weekend and his jaw stretching tic has returned with a vengeance. His strep test was negative, so no easy access to antibiotics. I naively thought it was all past us, and now I'm panicking. What should I do? Any chance this will pass with the virus? Any chance the tics are related to the discontinuing of a steroid inhaler he had been on for 6 months? (Doc discontinued it 2 days before tic onset)
  4. Bed bug bites look different in everyone. Some look like small red pimples, others are large mosquito-like bites, etc. And from the experiences my friends and family have had, they itch like crazy, although some people don't even react to the bites. I would be most concerned about the possibility of bringing them home. A mattress cover won't help save anything but the mattress, since they are happy to live in baseboards, furniture, or other cracks and crevasses. I would start by washing everything you brought with you and drying it on high-heat for a long time.
  5. For QT intervals, I would seek out a pediatric cardiologist. We had quite a scare a few years ago when our daughter had an EKG that showed long QT. we were sent to a pediatric cardiologist for a full work up, and his initial EKG also showed long QT on the printout. While she was doing the echo, the cardiologist hand measured all of the EKGs that has been done and discovered that she does not have long QT. If I remember correctly, it was something in a normal sinus arrhythmia that was causing the machine to detect long QT. she was declared healthy ans we were sent on our way. This was 6 years ago, and she has has no issues.
  6. My PANDAS ds has very specific tic triggers as well. For him, it is tumbling (he's a competitive gymnast), running, and sometimes eating with a spoon. He only has motor tics (nose scrunch and mouth opening), so we're just rolling with it right now. Outside of those times he is essentially tic free.
  7. My ds's tics initially got worse on Augmentin, but by the end of 2 weeks, they had gone from constant to completely gone. They have since snuck back in to a degree, but they are still so much better. His other issues have remained improved since his last bout with strep and subsequent treatment with Augmentin. Tics are tricky little things. Even a mild stuffy nose can bring back his nose tic, and grinding his teeth at night can bring back the jaw tic, but even then they're very seldom. The tics have never returned to the constant and relentless state that they were before antibiotics. We also had a quick diagnosis, and beginning to treatment. It was less than 2 weeks from the first tic to bloodowork and starting antibiotics. Hang in there. Hopefully improvement is just around the corner.
  8. Augmentin can be hard on the gut, and it can definitely cause headaches. Every time I have tried to take it myself, I have had to stop because of horrible headaches and yeast problems. My son tolerates it well with daily probitotics. He might just be tougher than I am.
  9. In addition to my ds's tics, he has a few strange habits that don't look like tics...for example, he will play with his lips (squeezing, squishing, tracing them with his fingers, etc). This started when his tics started, but has always stood out to me as different than this single-repetitive-movement tics. Tricho involves actually pulling the hair out. If your son is just pulling on his hair, I would say it seems more like a behavior or a compulsion. But the fact that your son believes it's a tic indicates that it is something he feels an uncontrollable need to do.
  10. I know. Weird question, right? But tics have been my ds's primary symptom (mouth opening, jaw jutting, and nose scrunching/grimacing) and I don't know what the new level of "normal" should be. He has been on antibiotics since March, with a few minor increases that quickly resolved. He is at a level right now where I don't think anyone else notices the tics outside of family and one good friend that knows what to watch for. I see the tics primarily in only one or two situations, with only a stray one here and there otherwise. I don't know how far to push with the docs. Of course, I would like them completely gone, but I don't know if this is a situation where I should be happy with 95%. I can accept and ignore them, if I can believe I am doing what's best for my ds. I just don't want to let it go if I shouldn't. Does that make any sense?
  11. I thought about that when I first noticed it, but floor is one of the few events they don't use chalk for, and the event preceding floor changes at every practice. I suppose the effect wouldn't have to be immediate, but the ticcing is so contained in this small half-hour time period of the day that I am leaning more toward an internal process than an external trigger.
  12. I need to get it on video, because it's really the only time I see tics lately. My only guess is that maybe it has something to do with the fact that he's moving so quickly and engaging so many muscle groups? I would guess it also involves a lot of adrenaline, which could potentially play a role. We're not talking somersaults here...but tumbling passes with multiple back handsprings, etc.
  13. My ds's tics are not made worse by any typical things either...but gymnastics, specifically floor/tumbling brings out every tic I've ever seen. When he's done with floor, the tics are done too. I can't figure it out.
  14. RLS caught my attention. My ds sometimes has these episodes in the afternoon/evening where he freaks out because he HAS to move his legs. If he can run and jump it resolves in about 15-20 minutes. If he is in a situation where he can't, it's a meltdown and he swears that his legs feel electric and he can't stand it. RLS was the closest thing I could find...but he sleeps like a rock (although he twitches/jerks on and off all night long). I never associated it with his PANDAS issues before, but your post has my gears turning.
  15. Our ped has given 2 weeks of Augmentin followed by 30 days of amoxicillin, and it has worked for us. My son's tics went from constant to once or twice a day before we finished the Augmentin, and stayed away on Amoxicillin. The only downside in our case was that 2 days after he finished the amoxicillin he has strep again and the tics returned. He is back on Augmentin, the tics are very rare and not everyday, and he is finally culturing negative for strep so we are about to try dropping back to amoxicillin again.
  16. We are also in the dc metro area. I know there are at least 2 other kids with PANDAS at our elementary school. The regional concentration here makes me wonder if there is something to the theory that certain strains of strep lead to PANDAS while others don't.
  17. We are new to this as well, but my ds only displays motor tics. It was pretty much an overnight presentation. He had strep in March and was treated with an antibiotic. Two days after finishing that antibiotic he had a fever and headache and was testing positive again, and was given a different antibiotic. Exactly two days after finishing that course, he started a nearly constant mouth opening tic and added a jaw-jutting tic a couple days later. He had bloodwork drawn a week after onset that showed elevated ASO and ADB, and was dramatically improved within the first 10 days of augmentin. He followed the Augmentin with a month of amoxicillin. He finished it on a Saturday. On Sunday, I was groaning because the mouth opening tic had mysteriously returned. By that night, he had a bad headache, and he tested positive for strep the next morning. He has quickly gone from a kid who got strep 4-5 times a year with strong typical strep symptoms and no unusual issues, to a kid with recurring/chronic strep presenting primarily with tics and barely noticable typical strep symptoms. My son's presentation was pretty clear cut, but even though your son's symptoms seem a bit less straightforward, a trial run of antibiotics might explain a lot.
  18. In past years, my son has always had typical strep symptoms...headache, stomachache, sore throat, fever. When we started down this PANDAS slope this year with recurring /chronic strep, I have noticed that his strep symptoms are less and less each time. The last time he had strep, he did not get a fever, but had a headache, sore throat and stomach ache. When he tested positive again last week, he only had a headache and his fever never went above 100. If his tics hadn't increased the day of the headache I would never have even checked his temp. Has anyone else noticed this phenomenon with recurring strep? I'm afraid he will eventually have no symptoms when he has strep, which would make catching it so much more difficult.
  19. You guys were right. He tested positive on a rapid test this morning. The doctor is running the overnight culture anyway...not sure what she's looking for, but I guess she has a reason. Ds is back on Augmentin for another 2 weeks. I plan on having him cultured at the end of the 2 weeks to know if he's clear or not. What usually resolves chronic strep like this? Do we just cycle through different antibiotics until we clear it? I know Augmentin may not have been the strongest choice, but dr and I both agreed that it was quick to clear the PANDAS symptoms that we're hoping to prevent this time around. Do we need to start talking about getting rid of the tonsils?
  20. He did have a negative overnight culture done on the same day they drew the blood that showed his elevated ASO and ADB levels. However, our stories are similar in that the month proceeding onset, he had strep and was given an antibiotic for 10 days that seemed to have cured the infection, but the second day off it he had a fever/headache/sore throat and an overnight culture revealed he still had strep. He was given another 10 days of a different antibiotic and 2 days after he finished it he started ticcing. That's when he got the most recent culture and bloodwork done and started on 6 weeks of antibiotics. All of us have been cultured overnight in the past 2 months, so we don't have a carrier in the house. I am keeping him home tomorrow to try and get him into the doctor.
  21. My ds just stopped antibiotics after 6 weeks. He is suspected PANDAS after a sudden onset of multiple tics after a month of strep. He did 10 days of Augmentin followed by a month of amoxicillin. We decided to try a break since he is about 98% free of tics and other symptoms. He took his last dose on Saturday morning, and last night he has a bad headache, so I checked his temp and it was in the high 99s. He seemed well all day today, but was complaining off and on that his throat was "dry." He just started complaining that he felt warm, and his temp is now 100.1. He can't have strep again this soon can he? Any ideas?
  22. We use Culturelle and Coromega. Neither seem to have any effect, positive or negative on my ds's tics.
  23. My ds has a nose scrunch tic that seems to be in direct proportion to his amount of stuffiness. I started him on Allegra last week and it is helping a lot, although he still gets scrunchy when he hits a rough spot.
  24. I don't have experience with this situation with my children, but I had severe neutropenia about 10 years ago as a reaction to a medication I was taking. Your daughter's symptoms make sense. I was running a high fever and felt like i had the flu. My ANC was 2, which landed me in a hospital isolation unit. I was given a series of neupogen injections throughout the week to restore my counts and I never had a reoccurrence. You may feel more at ease with a hematologist on board.
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