Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Agnes26

  1. DD8 is homebound right now bc everytime she goes to school, she flares. She's skyping with her class. I'd rather have her in school with her friends, but all things being equal, it's pretty great. We used this video to get school on board. http://www.arisleyschool.org/SKYPEweb.mov
  2. I'm so sorry. My DD's worst episode was as you described. She alternated between being feral and catatonia. She has absolutely no memory of those three months. I'm fairly certain it was strep for my DD even though she was culturing negative. There were many cases at her school. I have no idea what brought her out of it because we hit her with mega abx, ivig and finally, when she was ready, CBT. For us, the crisis --where she was totally non-functional-- lasted about a month. I relied heavily on family, who took turns coming from out of town to help.
  3. I can't help with the decision about whether to do it or not because it's still on the table here for my DD. I can tell you that I did have a tonsillectomy this past summer at 39. It was definitely miserable, but part of that could be because I discovered several days in that I could not tolerate the narcotic pain relievers. My doctor OKed ibuprofen for me and it made a world of difference in pain relief. Also, ice pellets from Sonic were my best friend during recovery. My insurance approved it based on a single elevated ASO.
  4. We are giving her Ibuprofen. We did IVIG last summer with Dr. K. It helped until her antibiotic dose was dropped from therapeutic to prophylactic and she fill off a cliff again. Since then our ped has had her on high-dose augmentin, which seems to keep her from getting strep, but not from having the autoimmune response. We've never tried steroids, but I think she could probably benefit from some now. I just can't get anyone to rx them for her. Feeling like a medical hot potato today.
  5. We are in Indianapolis. We've seen Drs. K and M. There is strep at school and DD8 is flaring while on Augmentin. Prior to school starting, she was 98 percent. She began having neuropsych symptoms the same day that the first case of strep was called in and they got progressively worse until DD was sent home with a fever last Thursday. Thursday, Friday, Saturday, while febrile, DD was 100 percent neurotypical. Fever broke Saturday and neuropsych symptoms ruturned Sunday. Her comprehensive culture came back normal. Dr. M said it's possible that she's having an auto-immune response to strep around her. We've not seen an immunologist, so I'm thinking that's our next logical step, but I'll take any suggestions. Today I have called our pediatrician, our neurologist, Dr. B's office, the head of immunology at our local children's hospital. Dr. M's nurse...I am desperate to get my daughter help.
  6. Dr. B is booked through the end of the year and not yet taking appointments for 2014. I'm looking for recommendations on other PANDAS immunologists. My daughter can't wait four months.
  7. I'm not ruling it out here. I would just make sure to have heavy duty abx onboard before and after.
  8. My daughter is also a canary. Definitely has the autoimmune response to others infected with strep. That's what we thought was going on here auto-immune neuro symptoms, but then she came down with a fever. That's not auto-immune, right? In a related head-scratcher, I discovered the doctor rx'ed the lowest dose of Cefzil. How does it make any sense to trade a high dose antibiotic for a low dose one? I will switch, but let's make it apples to apples. Geez.
  9. I wish, but doctor says she's on the max dose: Augmentin ES 600 2 tsp./day.
  10. Pinch-hitting doctor said it was likely strep no matter what the culture says. She called our ped, who said to pull her off Augmentin (she's been on it for over a year) and do a 10-day course of Cefzil. I'm terrified to switch and would prefer to add. Has anyone had success with Cefzil? Ironically, DD seems like her OCD has abated since the fever arrived.
  11. DD8 was back to 99 percent at the start of school three weeks ago. She is on treatment rx of Augmentin ES. Then on 8/14 school called to report a confirm case of strep and another. 8/15 DD begins to have noticeable PANDAS symptoms (anxiety/emotional lability/irritatibility/ocd), which improve over the weekend with ibuprofen. Symptoms increase all this week as more cases of strep are reported. Ibuprofen doesn't seem to be helping. Last night was bad. DD telling me OCD is repeating in her head and she's having intrusive suicidal thoughts. She doesn't want to kill herself, but OCD is telling her to. I call neurologist this morning to ask for steroid burst. Still waiting for a call back when school calls. DD is sick with 101.7 fever, headache, joint pain and sore throat. I mean. It's strep, right? I don't need a culture to tell me that. School nurse says that's all parents are calling in sick with. I don't know what to do. Our ped is out today. Do I bring her into the practice and hope she cultures positive and we get another doctor who is PANDAS friendly? I'm guessing she'll culture negative. She's only ever cultured positive once and she's on the treatment rx of Augmentin. I once asked our per what would happen if DD got strep on the Augmentin, and she said she'd take her off it and put her on something else. I'm terrified of DD off Augmentin? Anyone on Augmentin and something else? And where does the steroid burst fit into all this? Our PANDAS doc is Murphy.
  12. I would get her back on antibiotics.
  13. I wanted to bump this thread to see if there are still Indiana/Indianapolis meet ups.
  14. My tonsils. The ID I saw yesterday ran an immune panel on me and is referring me to an ENT. She did not reculture me or give me Azith or Clindamycin. I cultured positive for beta non group A in Feb and was put on Pen VK. Recultured a week after finishing the course of abx and was again (still?) positive for beta non group A. Then I was given Augmentin. Don't know if that cleared me. I'm guessing no, but the ID says I'm a carrier and she could continue to give me stronger abx, but I'll just keep getting strep as long as I have my tonsils. I'm not sure I completely agree. I do think my tonsils need to come out, but I think Azith or Clindamycin is needed, too.
  15. Could she have strep while on Amox? Sometimes when I get strep, I don't get the sore throat. I just get an upset stomach and pounding headache.
  16. Could you have Lyme? Also, how about an immune workup with an immunologist? How did they diagnose the non group A strep? Will it show up on a rapid? or culture (do you have to order a special one? Can they do strain analysis to see if you are getting a totally different infection each time, or if it is the same strain you aren't clearing? Not sure about non-group a, but for GABHS azith or clindamycin are usually recommended for clearing carriers. My younger dd was a strep carrier, didn't clear on augmentin, but did clear on azith. I don't really believe "just a carrier" is necessarily benign. Swedo said a carrier means "no immune response to strep". (Thus pandas kids can't be considered carriers b/c they have an immune response, beh change, to strep.) The question is, does your PANDAS dd react to your non-group a strep? Yes, DD is reacting to something, and because I've cultured positive several times, I'm pretty sure it's me. We've gotten her back to 100 percent before only to have her go backwards. ID did immune panel to check for deficiencies and is recommending tonsillectomy. She surmised I was a carrier and said tonsil removal is the way to go. No reculture and course of clindamycin or azith to clear.
  17. I'm a streppy person. Always have been. Strep several times every winter as a kid. A possible case of RF @ 18. When DD started school, I started getting strep again. Now I keep randomly culturing positive for beta non group a. A round of penicillin did not clear it. My doctor is sending me to an infectious disease specialist to figure out if my immunity against strep is just poor or if I'm a carrier. I'm on Augmentin right now. My DD's ped wanted to send me to an ENT to discuss tonsillectomy, but my doctor was concerned that doing that wouldn't necessarily solve my problem. It might be part of a more comprehensive treatment plan though.
  18. We started hydrating about a week before. In addition to the straw method, I bought all sorts of drinks I don't normally do. Gatorade, juice, fun waters. DD did have a brief headache about 24 hours after IVIG, but avoided other side effects.
  19. I'm no help with the abx question because DD is on Augmentin, but I'm curious about Dr. Reddy's. Our pharmacy switched to that brand round about the time DD started to decline. *sigh* It never occurred to me that the switch could be an issue. Hopeny, can you go into more detail about your concerns about the manufacturer? Sorry for the hijack. As for ibuprofen, our doctor said the same as Ariel's.
  20. We, too, saw Rahman. Can't say enough good things about him.
  21. Thanks. Pediatrician wants me to stay on the penicillin and retest.
  22. For the second time in four months, I've cultured positive for Group B strep. Does this mean I'm a carrier? If so, how the heck do I eradicate this? I have an rx for 10 days of penicillin. Something tells me this isn't going to do it. DD is in a flare right now, and I'm the cause.
  23. DD7 is about 8 months into recovery. We know onset of PANDAS was triggered by strep. She had IVIG last June and has been, and currently still is, on Augmentin ES for six consecutive months. She did ERP therapy at FSU in October. She is, thankfully, doing really well. Except. And it's a big one. She seems to have super intense short-term flares when she around someone who is a carrier. She will suddenly become emotionally labile, crying, angry. She writhes on the floor. She'll wander the room aimlessly. She doesn't make a whole heckuva lot of sense. It's as if someone flips a switch. When we remove her from the situation, she's fine --or at least on her way to appearing fine -- after about 45 minutes. She returns to us. I'm fairly certain that it's just strep triggering these flares because she's had colds, I've had colds and she doesn't seem affected by them. The only time she has had an uptick in PANDAS symptoms was for two days with the flu -- and then it wasn't the symptoms described above. Instead, there was a bit of checking OCD, that thankfully abated after ibuprofen. The other thing that leads me to believe that it's exposure to a strep carrier is that it always happens at one after school activity where she's with a group of kids that she doesn't interact with on a daily basis. I thought, well, maybe it's because she's tired and hungry at the end of the school day, but then we went on a field trip with this group first thing on a Saturday morning and whammo. Same possessed-like behavior. Once we left the field trip, she got progressively calmer and more clear until we hit that magic 45-minute mark and she was fine. Our doctor said that it's not unheard of for kids to flare for 24 hours. Anyone else have a child who has short flares like this? At what point in the recovery do flares stop? I'd appreciate any insights you all might have.
  24. We also did IVIG and DD did great for the first few weeks after the procedure until her Augmentin was dropped down to the prophylactic dose. We lost A LOT of ground. Another doctor prescribed the max dose of Augmentin ES (basically the Saving Sammy dose for her weight), and she's been doing well on it. She's been on that for @ six months.
  • Create New...