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Everything posted by AmySLP

  1. My clear cut PANDAS dtr. Finally got a tooth filled that we have been attempting to do for at least 9 mos. had to cancel several times due to extreme anxiety and refusal to let dentist in her mouth. Long story short, the decay was into the pulp. Basically the procedure was the closest thing to a root canal you could do to a baby tooth. Dentist said the decay was so deep. We are pursuing T&A because strep is certainly a problem for which my dtr responds well to abx. Wondering if this tooth decay played some role of underlying infection. I'm going to give tx dose of abx for 5 days (zith) and then resume 2x/week prophylaxis. Would you still aggressively pursue T&A? Thanks,Amy
  2. "Ds has never been treated with antibiotics for strep. I think the last time he had antibiotics he was 3 or 4 for bronchitis or RSV" PAnDAS or not...acute cases of strep need to be treated with antibiotics. Do you mean that he was swabbed and positive and your doc. Did not prescribe a course of abx? We know that untreated strep can lead to rheumatic fever affecting the heart, syndenhams chorea....which like PANs affects the brain causing uncontrolled movements. The rate of these diseases are still high in third world countries per an infectious dis. Doc we once saw, who thought my daughter may have a mild from of Sydenham's chorea. We were referred to a cardiologist by dr. Latimer several years ago when it became apparent that my daughters strep went misdx. For 2 months before abx treatment to rule out rheumatic fever. This is serious. You need a new primary care doc and report him to the state medical board after that if he's not prescribing abx for strep.
  3. My girls grandfather who is a bit OCD . ..and this seems true in my region with autistic kids too. Lots of engineers in my area with Parkinson's disease too.
  4. She probably has strep systemically, as she was not treated with abx. For the confirmed strep in January. Then she was simply on ammox., not enough to wipe out strep that she's had for months. My daughter had strep for 6 mos. that would not respond to abx. During that time she developed pandas. It took a big gun abx....clindamycin, to finally eradicate it. She too did not rise titers...it signals an immune response problem. If she did not test positive on the culture, but did so on rapid, its likely that it wasn't a good swab/ sample. Best advice....see a PANDAS doc. Have her swabbed for strep, even if you take her to a walk in for documentation purposes. This may get her a stronger rx. Also, strep lies in places other than the throat, so that may be a possibility as well since she's had it a while.
  5. Reading an old thread of mine...my dtr. Is getting hive like things on joints again....much smaller though than a few yrs. ago. She also I a scarletina felling rash that's itchy on her chest. This is crazy...she is just a few days off clindamycin for an obvious flare that came with tics and emotional lability out if the blue. These symptoms have resolved but now this! What to do now?
  6. About every 6 mos., but I asked for them.
  7. We were told clindamycin a nd rifampin prior to and after sx. By dr.T I believe
  8. The decline in ability to write and draw, the sudden onset, the sensory problems (shirt chewing), the raging.....these immediately stick out as reqsons for testing for an infectious agents that may have caused your son's change in behavior and onset of OCD. I think all here would agree that any sudden onset would warrant a trip to a PANDAS specialist and that really. You directed your question to those who had experience with non pandas OCD but I'm not sure you'll find those parents on this forum. I thought there was an OCD/tics discussion board? Not sure, but either way anyone here will tell you your son has many classic PANDAS signs and is the right age for onset. Get him to a PANDAS doc. Best of luck, Amy
  9. You have seen several of the same docs as I have I recall (Latimer, Bouboulis, Trifletti, and Elia) ....who actually did the IVIG? The response we got so far is that if she's controlled on the ABX then its not an option. I instead wonder if she is more likely to respond due to that. She goes to dance competition next weekend and of course all their dances are late at night, when the tics really get going. If her body is moving actively then the tics are reduced or eliminated, but I don't know if that's the case with the eye blinking. Need to squash this by next Saturday and hoping that clindamycin for 10 days will do that this time around like it has in the past.
  10. My daughter had a ramp up in symptoms of emotional lability, intrusive thoughts, raging over the last few weeks. Her therapist thought I needed to have her seen by psych and consider anti-depressants ....SSRIs or natural alternatives. I wondered if she was heading into a PANDAS flare and needed an abx increase. Well I was right...tics have returned (its been about 6 mos. since the last episode). They are the worst in the pm...almost not even noticeable in the daytime. She is complaining that her eyes actually hurt from all the blinking. She has throat clear and repetitive movement of her fingers in front of her eyes, all which are old tics. She has a few itchy hive like bumps on her elbow. She is mature enough to describe what's going on but so confused about it. Started a clindamycin cycle, as this has helped in the past. She had been doing ok on zith. 2x/week for about 6 mos., but I slacked a few times. Every time I think we may have beat this, PANDAS returns at least every 6 months. This always makes me wonder if IVIG could help heal her. Since she was 4 , It's been 4 years, 4 PANDAS docs later after 6 months of strep at time of onset. So tired of just putting a band-aid on this disorder!
  11. Did not have time to read all the responses...but I'd consider another course if clindamycin with rifampin.. My daughter had strep at age 4 for at least 6 months, while PANDAS set in.
  12. Www.radiopandas.com....tues.April 30th at 9 pm...interview with Susannah Callahan and call in with comments and questions.
  13. Did not read all the posts, so not sure if someone else told you this....but Susannah will be speaking on PANDAS radio I believe it is tomorrow night. If you are not familiar this is an online radio program run by a PANDAS parent and it typically has a question call in portion. Google radio pandas to find the link.
  14. My daugher took Bactrim as part of an ABX combo for over a year. She was 5-6 at that time I believe.
  15. I do not think there is anyway to predict Parkinson's although there certainly is a genetic disposition to it if a family member has had it. I think our kids are susceptible to automimmune disorders, of which PD is not.
  16. Amy, Interesting. My grandfather had Parkinson's. My son has pallilalia. Same speech issues as those above--difficulty with speech expression (at times). Starting same sentence over and over until he finally spit it out or got frustrated and gave up. Much improved over the years. Had word finding issues. Dysphasia/Aphasia. Also diagnosed with LKS, CAPD which we seem to have 'recovered' from for the most part. He became mononsyllabic about age 4 and nearly lost all speech at age 6. In a child that had developed normal speech and vocab up until that point. Has had near miraculous return through years of meds, speech therapy and supportive IEP/academics. Suspect PANDAS...much improved. Still has some compulsive tics and quirky, non debilitating OCD. All improving the older he gets-- nearly 13 now. So, does this predict a foreboding he may have Parkinson's later in life??
  17. This can also be basal ganglia related. Parkinson's patients, can have pallilalia, a form if stuttering. Sometimes this is a side effect of meds but I've had patients who have the stutter start early in their dx. Process. I'm a speech path. Working in a setting specializing in Parkinson's disease, so I see quite a but of this.
  18. Can't say enough about clindamycin to clear strep infection. So so important. My dtr. Had strep for 6 mod at age 4. Emailed dr. Swedo her story and she suggested dr. Use pediatric red book guidelines which apparently defers to clindamycin for stubborn infections. By that time my dtr. Had full blown pandas.
  19. A little different since our dtr. Was 7...but last spring her brownie trip did their first overnight. I used PANDAS as the reason I needed to go in early and bleach the place. Myself and two other moms did all the beds, showers, door handles,, and kitchen before the girls got to get in there. It have me peace of mind knowing my daughter was safe from strep and anything else that was lurking there! Good luck Jill! My daughter loved everybit of it! Now we are gearing up for this years overnight in April.
  20. So glad to hear you found this forum like so many of us who credit it for helping our childen and are on the road to treatment.
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