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momindc

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  1. My 12yo dd has been battling pandas/lyme & co. now for about 4.5 years and she has been on pulsed antibiotic therapy (a cocktail of a three different ones at a time) for the last about 3 years. She has had ups and downs but was generally at about 75% overall while on the antibiotics until she got c-diff this last fall and had to take an antibiotic break (other than the flagyl to treat the c-diff) for a couple of months to get her better and give her body a break. Her tics (one of her main symptoms from the very beginning of our pandas/lyme journey) gradually got worse over the break from a
  2. Follow up question. If she is sensitive to mold toxins, how do you treat that?????
  3. I've only posted a couple of times over the last year or so, so for a bit of background DD age 10 was diagnosed PANDAS by Dr. L (in MD) in the spring of 2013. In the fall of 2013 she had her tonsils out and in November 2013 continuing through today, she's been under Lyme + coinfections treatment (pulsed antibiotics). DD's symptons started literally overnight in March of 2012 - numerous motor tics, hyperactivity, urinary frequency, inability to sleep, anxiety and moodiness. It wasn't until the fall of 2013 that it was pieced together that a tic bite that she got in the fall of 2011 on
  4. Thank you both for the very thoughtful responses. I am comfortable with the pulsing plan as it was explained to us and I mis-typed above, the pulsing plan for now is: 3 cycles of the following: Week 1, MWF ONLY - Omnicef 2X/day, Azythromycin 1X day, Bactrim 2X/day; Week 2 - same as Week 1 but add Flagyl 2X/day on Th & Fr only; Week 3 - OFF. I understand that the pulsing works very well for the majority of their patients and the protocal will address all coinfections over time.
  5. DD (9 1/2) was diagnosed with PANS/PANDAS in June of this year (2013). Cunningham test #'s were "off the charts" according to Dr. L. She has suffered with motor tics that started suddently out of the blue in March 2012. We've also dealt with hyperactivity, anxiety, frequent urination, bedtime issues and irritability. DD was put on antibiotics in June (she's been on Omnicef, Augmentin and now Bactrim - one at a time) to which we saw no really good results, and then we had her tonsils/adenoids taken out at the end of Sept. (2013). Tonsils were cultured - no strep or staph, but h. influenza.
  6. Just bumping up my post below from last week to see if anyone has any thoughts or insights on the H. Influenza and/or where we're at 3 1/2 weeks now post tonsillectomy? Would love any thoughts/insights. Thanks! momindc
  7. I'm just bumping up my post below from last week to see if anyone has any thoughts on this - on the H. influenza or where DD us at 3 1/2 weeks now post tonsillectomy. Would love any thoughts/insight. Thanks!
  8. DD's tics are still bad - even worse sometimes than before the surgery. And now she is having an incredibly difficult time getting to sleep at night. It's taking her about 2 hours or longer every night to fall asleep. She gets upset that she's having trouble getting to sleep and then works hersulf up into a tailspin - frustration, crying, etc. DD is 9 and always sleeps in her own bed, but she's slept with us the last two nights just so we could help calm her down enough until she was able to doze off. This difficulty falling aleep is all new following the tonsillectomy. And she is very s
  9. DD (9) got her tonsils out 1 week ago today. All was good the first couple of days and then the last 3-4 days she's experienced a tic explosion - bending and stretching tics that are really bothering her. We don't see Dr. L until late this month (Oct) as she likes to see patients 5-6 weeks post tonsillectomy. Her office tells me that tics and other issues can get worse at first following a tonsillectomy but that we should see improvement over the next several weeks and that tics are always the last symptom to go. We do not have the culture results yet from her tonsils so we don't yet know
  10. is IV abx something that give standard? I don't recall the Dr. saying anything about IV abx but I'll ask. Thanks!
  11. yes she is on antibiotics and has been since some time in June. First she was on Omnicef and then she was switched to Augmentin because the Omnicef didn't seem to be really working.
  12. A little background first... My now 9yo daughter had a sudden explosion of tics (no history of them, no family history of tics) back in March of 2012 just a few months before her 8th birthday - neck jerking, abdominal jerking, finger sniffing, etc. Our pediatrician immediately swabbed her throat and ran some titer tests - all checked out fine. She concluded that they were just tics and would hopefully go away, but referred us to a neurologist since the tics were very bothersome to DD and to us. Needless to say, the tics did not go away, and my kid who was also never hyperactive before, sta
  13. What type of therapist should one look for. Any recs in the DC area?
  14. How do you know if your child is a good candidate for CBIT for tics? Thanks for any thoughts/insight.
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