AmySLP Posted March 13, 2009 Report Share Posted March 13, 2009 After seeing a peds. immunologist yesterday, I have a very basic question for all of you based on your research and experiences. Can a child just be considered a "carrier" of strep (no classic strep symptoms or obvious illness), but have PANDAS, if they meet the other diagnostic criteria? My daughter had at least 6 positive rapid tests in the last 7 months, but without full-blown illness/strep infection. The ped. immunologist states that my daughter absolutely doesn't meet the criteria for PANDAS b/c she is just a carrier (her titers were essentially non-existent ASO=5, AntiDNAnase-B-negative (undetectable). HOWEVER, the doc. could not explain why her tics and behaviors have improved with every course of ABX and now prophylaxis ABX. Just told me to stop the ABX (indicating she's been on too many in her life already, they cause liver damage, and have adverse effects on the bones). Also told me to see a neurologist to look at the tics (which she did see during her exam). She also told me that tics can be typical in children her age (I have seen at least 1000+ children in the years I've worked as a speech pathologist, and have never seen tics in neurotypical children). It was with that comment that she lost her credibility with me. Amy Link to comment Share on other sites More sharing options...
AmySLP Posted March 13, 2009 Author Report Share Posted March 13, 2009 Dr. K e-mailed me back immediately tonight and indicated "yes" that it is possible to be a strep carrier and still have PANDAS. I'd still love all of your input! Thanks, Amy Link to comment Share on other sites More sharing options...
EAMom Posted March 13, 2009 Report Share Posted March 13, 2009 A lot of PANDAS parents notice behavior changes or tics as their only strep symptom (no fever, no sore throat). These kids culture positive and respond to antibiotics (or IVIG.) Also, a lot of PANDAS kids have low titers (ASO, anti-dnase b ). Our dd had a FEVER 1/08. This is when her behavior started to change. Symptoms ramped after tooth extractions and she (and her sister) both cultured positive in March 2008. The strep expert dh talked to said he would consider our PANDAS dd to be a strep carrier since she still cultured positive 2 mo. after her presumed strep infection. Our dd also had low titers in March and April of 2008, despite the positive culture. I believe it is a big mistake on the part of docs to assume 1) strep carriers don't get PANDAS and 2) that the strep carrier state is benign. Here's a paper by Ed Kaplan discussing Azith/intracellular strep/carriage. http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 Read the paragraph that starts at the end of page 1398 (1st page) and continues on the next page...even Ed Kaplan admits that the carrier state may not be as benign as originally thought. Strep carriage can act as a source of reinfection and the strep can spread throughout the rest of the body. I most certainly believe that strep carriers can have PANDAS. Also, nowhere is it stated that you need elevated titers (ASO, anti-dnase B ) to have PANDAS. Read Buster's aug 24 and jan 11 posts on titers. They are well researched and put to rest a lot of confusion (that docs have) about titers. http://www.latitudes.org/forums/index.php?...art=#entry29305 Link to comment Share on other sites More sharing options...
colleenrn Posted March 13, 2009 Report Share Posted March 13, 2009 I wholeheartedly disagree with that doctor. A strep carrier has a positive throat culture, but does not show symptoms of an acute strep infection or show a rise in strep antibody levels. In my opinion, PANDAS children ARE strep carriers, but that carriage MUST be erradicated b/c it is NOT benign. My children never show physical signs of strep, nor elevated titers, so that would technically classify them as carriers. What they do show is the full range of behavioral symptoms (OCD, tics, anxiety, hyperactivity, etc..) when they get strep. I think that physicians who make those statements are basing it on what the standard has been prior to knowledge of PANDAS. It is not a coincidence that lots of our children do not have any physical symptoms with strep, nor elevated titers, but explode with psychiatric symptoms. To tell you to stop the antibiotics, in my opinion, is ridiculous. It sounds like your child responds to antibiotics, HAS positive streps, just doesn't react to strep in the ways that are "typical" for strep. Most people get really physically sick when they have strep, but PANDAS children get emotionally sick. I just don't get why these doctors cannot see the writing on the wall. The fact that your child has had 6 strep infections within 7 months is a major clue. Normal titers do not rule out PANDAS in any way and that is another falsehood that many physicians are telling parents. I do not believe that any strep carriage is benign, but most especially in a child with PANDAS. If your child responds to antibiotics i think it would be not doing the right thing to stop them. I have been there/ done that before with my daughter and things just got worse. Do you have a physician that will continue prescribing? Colleen Link to comment Share on other sites More sharing options...
starwars99 Posted March 13, 2009 Report Share Posted March 13, 2009 I believe my son is a carrier, although never really called that by the docs. No symptoms ever, but tics. When he tics, he's tested. Never a pos by rapid, but will come back pos from the lab. He initially had Impetigo 2 1/2 yrs ago and after that, has never had sign of strep other than tics.. then diagnosed with PANDAS. He has had, and right now does have an elevated ASO and gets better with ABX, so therefore, I do believe. Link to comment Share on other sites More sharing options...
AmySLP Posted March 13, 2009 Author Report Share Posted March 13, 2009 My Pediatrician will continue to prescribe, as long I go through with the T & A on April 1st. I'm really feeling torn on that issue too. (I've read all the posts on here, but struggling with the fact that my daughter is a "carrier" and so will the T & A actually help (this immunologist advised strongly against it). I did not give ABX for 48+ hours at this point. I don't know if it was just my belief that all this would return soon after or if already my daughter is showing increased behaviors. I videotaped her this evening for the first time, in one of her absolute meltdowns over several trivial items. I hadn't seen one of these in weeks. Her facial tics do not look increased yet, but the babysitter did report her ritualistic/repetitive behavior of vaginal touching/itching resumed today-Could it be coincidental? (I think I know the answer to that.) We decided to stop the ABX for a few days and document daily with a journal and video camera to have "evidence" the next time we see someone. Hoping to get an appt. with Dr. Latimer in DC in the weeks to come. Thanks for all your input...It helps me to keep forging ahead with this Amy Link to comment Share on other sites More sharing options...
peglem Posted March 13, 2009 Report Share Posted March 13, 2009 I experienced the same thing with my daughter- behavior (mostly OCD) was her only symptom and I was always able to tell when she had strep based on her behaviors. Just for fun , we tested her a few times when I didn't think she had strep and she did come out neg. on those. Her ASO & antiDnase were low.... all the specialists (ENT, Immunologist, Rhumatologist) said, no she's just a carrier. I finally just said, "Fine-maybe its not PANDAS, but whatever it is, antibiotics makes it better." So, prophilactic antibiotic was prescribed on a trial basis- good results and now she's on them long term. She did have the T&A, which did not have any effect on the chronic strep w/ behavioral symptoms only. Link to comment Share on other sites More sharing options...
michele Posted March 13, 2009 Report Share Posted March 13, 2009 In the early days my son got the strep and the episodes together. Now he gets the behaviors and tics even without the strep but with exposure to others who have it or other illnesses such as fevers and virals. He has not tested positive to strep in awhile but still has had those saw toothed exacerbations over the past year several times. Each episode lasts about eight weeks. He is on daily antibiotics Omnicef 300 mg a day. However someone I know who's son is PANDAS just got strep on the pen vk. He then was given erithromycin. So beware they can get strep on antibiotics! I experienced the same thing with my daughter- behavior (mostly OCD) was her only symptom and I was always able to tell when she had strep based on her behaviors. Just for fun , we tested her a few times when I didn't think she had strep and she did come out neg. on those. Her ASO & antiDnase were low.... all the specialists (ENT, Immunologist, Rhumatologist) said, no she's just a carrier. I finally just said, "Fine-maybe its not PANDAS, but whatever it is, antibiotics makes it better." So, prophilactic antibiotic was prescribed on a trial basis- good results and now she's on them long term. She did have the T&A, which did not have any effect on the chronic strep w/ behavioral symptoms only. Link to comment Share on other sites More sharing options...
melanie Posted March 14, 2009 Report Share Posted March 14, 2009 In the early days my son got the strep and the episodes together. Now he gets the behaviors and tics even without the strep but with exposure to others who have it or other illnesses such as fevers and virals. He has not tested positive to strep in awhile but still has had those saw toothed exacerbations over the past year several times. Each episode lasts about eight weeks. He is on daily antibiotics Omnicef 300 mg a day. However someone I know who's son is PANDAS just got strep on the pen vk. He then was given erithromycin. So beware they can get strep on antibiotics! I experienced the same thing with my daughter- behavior (mostly OCD) was her only symptom and I was always able to tell when she had strep based on her behaviors. Just for fun , we tested her a few times when I didn't think she had strep and she did come out neg. on those. Her ASO & antiDnase were low.... all the specialists (ENT, Immunologist, Rhumatologist) said, no she's just a carrier. I finally just said, "Fine-maybe its not PANDAS, but whatever it is, antibiotics makes it better." So, prophilactic antibiotic was prescribed on a trial basis- good results and now she's on them long term. She did have the T&A, which did not have any effect on the chronic strep w/ behavioral symptoms only. How long after the antibiotics are started do you see some relief from tics or oCD? Link to comment Share on other sites More sharing options...
peglem Posted March 14, 2009 Report Share Posted March 14, 2009 [ I experienced the same thing with my daughter- behavior (mostly OCD) was her only symptom and I was always able to tell when she had strep based on her behaviors. Just for fun , we tested her a few times when I didn't think she had strep and she did come out neg. on those. Her ASO & antiDnase were low.... all the specialists (ENT, Immunologist, Rhumatologist) said, no she's just a carrier. I finally just said, "Fine-maybe its not PANDAS, but whatever it is, antibiotics makes it better." So, prophilactic antibiotic was prescribed on a trial basis- good results and now she's on them long term. She did have the T&A, which did not have any effect on the chronic strep w/ behavioral symptoms only. How long after the antibiotics are started do you see some relief from tics or oCD? With most abx, we saw improvement w/in about 48 hs, but with zith, it was almost immediate and pretty dramatic- w/in @ 5 hours. But still, the strep would be back @ a week after finishing the zith (2 to 3 days after others). After going prophilactic on zith, she hasn't been tested for strep. Ideally, I'd like to stop the zith and see if the strep comes back. I'm thinking that after 18 months of proph. zith, we may have cleaned out the biofilms and perhaps she could move to an abx that would just prevent new infections from the outside. I think before she was being reinfected from internal sources and that's why we could never get rid of it completely. Yet, I'm kinda afraid to mess with it. Definitely don't want those horrors back! On the other hand, the good bacteria in the body will also form biofilms that can be good for the body (especially the gut) so I guess I need to make a decision that I can be comfortable with. Link to comment Share on other sites More sharing options...
EAMom Posted March 18, 2009 Report Share Posted March 18, 2009 It took us a lot longer, but our dd was really severely affected (PANDAS episode had been going on for 5 mo, including a week of hosp. for malnutrition/anorexia nervosa at age 7.5 years). We saw a subtle improvement in mood after 5 days on Azith; 10-14 days for OCD/anorexia nervosa to resolve; tics/abnormal movements (which were the least of our worries) took 6 weeks to go away. She had been on other antibiotics for over 2mo. before we tried the Azith. (Augmentin, then Amoxcillin, then a cephalosporin, then back to Amoxicillin). We did see initial mood improvement on Augmentin, but still had the OCD/eating disorder. She got worse again on the Amoxicillin and they wanted to rehospitalize her (eating disorder docs, malnutrition issues) just before we started the Azith. Our dd may be different than other PANDAS kids in that tics were not our biggest concern or most salient/problematic feature of her PANDAS. Tics showed up later than the OCD/eating disorder/tantrums/mood change but also took the longest to go away. Link to comment Share on other sites More sharing options...
Healthnut Posted March 26, 2009 Report Share Posted March 26, 2009 My kids are seeing dr. k. for pandas. they were mis-diagnosed with tics and add. Check out dr. k.'s website he is very good!! http://www.webpediatrics.com/pandas.html Link to comment Share on other sites More sharing options...
colleenrn Posted March 26, 2009 Report Share Posted March 26, 2009 Healthnut, How old are your children? I see that your oldest had IVIG. Are they also on antibiotics? There are some families here that have also done IVIG with Dr. K. Colleen Link to comment Share on other sites More sharing options...
madhu Posted May 7, 2009 Report Share Posted May 7, 2009 hi Colleenrn and Healthnut, could you please tell if you are doing the IVIG with Dr K and if so what were the results.thanks. madhu. Link to comment Share on other sites More sharing options...
colleenrn Posted May 7, 2009 Report Share Posted May 7, 2009 madhu- We have not done IVIG. Colleen Link to comment Share on other sites More sharing options...
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