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  1. Son (7) had his pandas onset in February 2018, treatment starting in April 2018, and mostly in remission by June. He was on abx until September with no problems. Had a dental cleaning in November 2018 and a few days later we were pretty sure he was having a flare. That said, we think the flare probably started the week prior to the dental cleaning. Being honest, we have no idea if the teeth cleaning had any correlation to the flare. In any event, once the flare was obvious, we started abx again and symptoms went away in a day. In February, his bloodwork showed low neutrophils so hi
  2. Maryangela - thanks for your response! It sounds like you have a kid like mine who has pandas and also adhd - is that right? Or did he only have adhd symptoms because of the pandas? My son has had adhd symptoms since infancy..... The adhd med we are currently on (concerta) keeps him pretty close to his natural personality (which is very happy, go with the flow -- which is why, when he suddenly started being defiant last year, we knew something major was going on). Previous stimulants made him moody. I am trying to follow your timeline: what happened to the bug fear? Was it just that o
  3. Son (7) was diagnosed with Pandas over a year ago, treated and generally went into remission by June 2018. After going off abx in September, he had one flare last fall, and possibly a small flare this last January (both immediately treated with abx, and symptoms immediately resolved), but otherwise he is back to baseline. His primary symptoms were hyperactivity and rage/defiance. He never had classic tics or OCD. I know ocd/anxiety can look different in different kids, but his specialist confirmed he didn't have oct/anxiety. She said that she anecdotally sees a subset of boys with preexist
  4. We have a son who likely didn't have any significant tics or OCD relating to PANDAS. His primary symptoms are rages and increased hyperactivity. He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6. He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism. After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares. Our situation is muddled by his pre-existing adhd diagnosis. He was alr
  5. Hi - I posted most recently back in November when DS(7) was having his first flare. His initial onset was last winter, and with abx he returned to 100% by summer. In sept we took him off abx, and 7 weeks later he had a minor flare. Re-started abx, and the flare disappeared immediately. His specialist advised continuing abx until at least the next appointment (in two weeks). After the November flare, his augmentin dose was dropped by 30% (convoluted story that the original dose was technically a bit high for his body weight, but they didn't offer pills for his body weight. So now we cut O
  6. DS(7) had been on treatment dose augmentin for 6 months following his diagnosis. Then we tapered off abx, and he was successfully off for 7 weeks. Then he had a minor-moderate flare at the beginning of November. It took us 10 days to determine it really was a flare (symptoms got bad at day 10), then we started on abx again. Major symptoms immediately disappeared, and all symptoms fully remitted within 10 days of abx. Doctor recommended staying on treatment dose abx longterm. Son was on 500 augmentin twice a day, but two days ago we reduced to 375 (which is technically his treatment dose ba
  7. We just returned from an appointment with our specialist following son's (7) first flare. In brief: - Son's first symptoms of pandas cropped up either last November (in earnest) but exploded in February. On a scale of 1 to 10 (10 being the worst) relative to other pandas' kids as reported on this and other sites, i'd say he got as bad as a 5 or 6. His symptoms were increased adhd, new anger and emotional liability, and some autistic qualities. - Two months after the explosion (but potentially 4-5 months after very first symptoms), he was diagnosed and treated with augmentin. We
  8. Can a pandas kid produce strep antibodies (dnase) without a strep infection? During his recent flare, his dnase were 850 (upper normal is 350). I'm 99% sure he has not had strep in a year -- because he was on abx until 6 weeks before the flare, and then we did a bunch of strep swabs and cultures (including anal) after stopping abx right through to when the flare started. Everything was negative. He had no symptoms of strep during any of this. Unfortunately we don't have a baseline dnase number - we didn't run bloodwork when he was feeling better. So it's possible he always runs high.
  9. Not getting any hits on my last question (flare versus reemergence) so let's narrow down the question a little! Let's assume DS is having a flare. He was at 100% remission, no abx prior to the flare. Flare started out with minor symptoms (minor irritability at school), and within 10 days escalated to minor-moderate -- which is when we realized something was happening. Our pandas doctor immediately prescribed 10 days abx. We also restated ibuprofen, fish oil, and D3. We are awaiting new bloodwork to see if there is an infection (but don't have anything recent to compare to, for
  10. DS(6) was diagnosed with pandas in April. Symptoms likely started 5 months before that, but he really fell off a cliff in February. His Pandas is not classic with tics and classic OCD. Rather, he looks more hyper, disengaged and autistic. DS had a previous adhd diagnosis at age 3 and has always had some autistic characteristics. Pulled him out of school when diagnosed in April because he was unable to function there. Started Augmentin in April, and saw gradual improvements over 2 months. After two months on augmentin, he seemed much improved at home but hard to tell because sc
  11. Our son started a steroid taper 2.5 weeks ago. First 7 days on 2mg/kg, next 7 days on 1mg/kg, next 7 days on .5mg/kg, and last 7 days on .5mg/kg every 2 days. Within hours of the first dose, we saw a huge improvement. First 12 days were consistently fantastic. Mood was greatly improved, anxiety reduced (but not entirely), son was totally amenable to stopping his stereotypies (he has what we initially thought were tics, but were in fact very complex stereotypies involving full body movements along with imagining sessions). On the 13th day (six days after the first decrease, and 1 day before
  12. We had our follow up at Rothman Center on Thursday. Unfortunately Dr. Murphy was sick, so we saw her RN in her absence. Dr. Murphy had given her the go-ahead for my son to start a steroid taper. We picked the prescription up yesterday for the first 7 days, and it's 15mg/5ml. He's 6 yo and 59lb, so the dosing is 26.4ml twice a day. That is a lot of liquid - a couple centimeters at the bottom of the glass. And it's really hard to swallow. We had it grape flavored but it doesn't really help. We've gotten him to take two doses but it's been tough (and i don't blame him). When our ped
  13. We are likely going to start a 4 week steroid taper next week for my son's PANDAS. Following two months of antibiotics with some improvements, the primary symptoms we still have are major anxiety, increased hyperactivity, and very significant stereotypies (specifically: intense imagery movements). We previously did a 5 day steroid burst, and saw good effects on day 5, that lasted for 3 days. I understand this suggests that a full steroid taper is likely to be helpful. I see a lot of people on this site say how steroids were fantastic, but that they rarely have lasting effects.
  14. I've posted on some other posts about my son's PANDAS - the most dramatic symptoms of which struck overnight in February (it's possible other symptoms were creeping in since November). He does not have debilitating OCD or tics, but had increased anger, adhd, emotional liability, defiance, ASD type behavior and meltdowns that make school untenable, minor sleep disturbances, very complex stereotypies, separation anxiety, etc. Some of these behaviors were drastically increased behaviors of existing conditions (adhd, stereotypies, some minor ASD qualities), while the others were totally new beha
  15. Thanks for your thorough response! Yes, we are very sure the behaviors are PANDAS driven (or something analogous) -- because there was such a sudden onset, and the rage/violence/dissociation were so incredibly out of character for him. So we continue to actively treat the PANDAS. We had hoped antibiotics were doing the trick, because home life had been pretty flawless for the 6 weeks he was home from school with a nanny. But the travel and camp i guess pushed his boundaries, and he's not as remedied as we had hoped. We are going back to see Dr. Murphy, who, based on our last appointment, wi
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