dcmom Posted April 2, 2011 Report Posted April 2, 2011 I have a little situation here, and wanted to know if anyone has seen any papers on this, have any thoughts, or have a suggestion of who to consult with if we need. Both of my daughters have pandas. My younger daughter Julia woke up Thursday with a 102.5 fever, sore throat, cough and general malaise. I took her to the doc, and her rapid was positive for strep. She has been on both zithromax and augmentin, daily, at treatment level doses, with 100% compliance. She is on the multiple abx because she was bitten by a lyme infected tick in November (yes- the universe is trying to kill me). She never got a bullseye, rash or any symptoms from the tick bite, but we have been treating her to be on the safe side (and to preserve what is left of my sanity). She did have a pandas episode in December (no known cause- tick bite- maybe - who knows). I do not believe chronic lyme is an issue with her. So, the ped prescribed clindamycin (75 mg, 3x per day, 48lbs) for 10 days. My concerns (well the few I could narrow it down to): Will the clinda clear the strep? If/ when she has a pandas reaction (for H1N1, for her, it was immediately upon recovery from illness), and we need to use steroids, how can I be reasonably sure that the strep is cleared? She started the clinda Thursday night. I will have to give it until Monday- but if she is not almost 100% in terms of illness symptoms, I think I need to figure out if the clinda is enough- it must be a pretty virulent, resistant strain... who could I or my doctor consult about clearing the strep? (my peds are pretty open and reasonable). Oh, and the last thing- if she can get strep on multiple antibiotics- why bother with the daily abx for preventative. I know the immune modulation, yada, yada- but if I wean her off abx and she had no symptom increase- am I better at just rolling the dice with strep, rather than a lifetime of daily antibiotics? I guess her pandas reaction, and how severe to this strep episode will give me a clue if the daily antibiotics are helpful. Does anyone know if clinda is immune modulating- because I have her off of all other abx right now. Thanks for any thoughts you have, even just a direction to look, or another way to think about things. Eileen
JJMom39 Posted April 2, 2011 Report Posted April 2, 2011 Eileen-Because I am new to the world of PANDAS I'm sorry I can't be of much help other than to offer a hug and support. I can tell you that very recently our ped told me that she now uses only Clinda or Keflex for strep. There is too much resistance to azith, amox and Omnicef where I live (central Ohio) so Clinda and Keflex have been effective. And she uses Clinda to clear strep in a carrier. Can your ped order a culture with sensitivities?? I do not know if Clinda is immune-modulating or not. You could re-do the rapid and a culture at the end of the course of Clinda to see if the strep has cleared. At least that is what our ped suggested to me with my ds's last episode of strep. He took azith for that infection (the azith was not her idea), and she said he needed to be off of that for 5-7 days before being re-tested. I do not know what the interval would be with Clinda, but I would assume it would be much shorter. When I asked our ped if that rapid and/or culture came back positive how we would know if that meant the infection had not cleared or if that meant ds was a carrier, she said usually a positive with no symptoms would mean carrier. That confused me though because strep infection can be asymptomatic. Anyway, re-testing is something to ask/think about. Have you ever had your dd tested for carrier state? Does she have her tonsils? When was the last time your dd had strep? Just wondering if this is a new infection or one that morphed after exposure to the abx she has been taking. Wish I could be of more help! Sending (((((hugs)))))) Will the clinda clear the strep? If/ when she has a pandas reaction (for H1N1, for her, it was immediately upon recovery from illness), and we need to use steroids, how can I be reasonably sure that the strep is cleared? She started the clinda Thursday night. I will have to give it until Monday- but if she is not almost 100% in terms of illness symptoms, I think I need to figure out if the clinda is enough- it must be a pretty virulent, resistant strain... who could I or my doctor consult about clearing the strep? (my peds are pretty open and reasonable). Does anyone know if clinda is immune modulating- because I have her off of all other abx right now.
Tamistwins Posted April 2, 2011 Report Posted April 2, 2011 Hi Eileen, I'm very sorry for what your family is going through. I have 3 pandas children I empathize. Because of what I have been going through with my older two I luckily was able to diagnose my little one early and he is doing great. Unfortunately, we are still struggling with my twins and life is sometimes unbearable. My son was treated with clindamycin prior to a diagnoses. He was on 10 days of another antibiotic and still wasn't cleared of step, that's when he was given clindamycin and it cleared, he was banging his head at that time due to the strep. Clindamycin is used to treat carriers too. Just make sure you retest to make sure its gone. My son was negative on rapid but positive on lab test. What made u test for strep if your daughters were on antibiotic, what symptoms did u see? my son complains of sore throat and daughter of stomache ache but they are on so much medication. I never know what to do. They are being treated for lyme or bartonella too, they are on azithromycin, omnicef, rifampin and tindamax 2x week. I just can't imagine them having strep taking all of the above.
P_Mom Posted April 2, 2011 Report Posted April 2, 2011 I am just throwing this out there based on my experience...maybe relevant, maybe not. But, when I was being treated for misdiagnosed Lyme, the multiple, high dose antibiotics put me into "bone marrow supression" and my white blood cells completely plummeted. I started to get infection after infection which I could not clear. (lack of white blood cells) They pulled me off antibiotics immediately until my counts recovered. I think IF this would happen to a PANDAS child, it couldn't be good. I would just recommend a CBC every couple months to monitor blood counts...maybe the high dose antibiotics are making her more susceptible to infection?
peglem Posted April 2, 2011 Report Posted April 2, 2011 (edited) I have a similar situation. My daughter was on zith and keflex.. The keflex was added because of symptom increase on just the zith. Rapid strep test came up positive. Clinda was prescribed-10 day course to clear the strep and she was rechecked 2 days after clinda- positive rapid. But this time a swab was sent for culture and sensitivity testing. The culture was negative. So, we're on augmentin right now. I don't know what to do for treatment anymore. Physical symptoms are subsiding- they were not her usual PANDAS symptoms- she had/has fluid and swelling in her hand joints and swelling in her knees and serious chorea- could not use her hands at all. But the OCD is BAD in the aftermath. We've never sent positive rapids out for culture before, it was only sent this time to get sensitivity testing done. But this calls into question the validity of every rapid we've ever been positive on (A LOT of them)... Looking this up, some of the literature says that if a child is heavily colonized with staph aureus, the rapid can show a false positive, but of course, this is considered to be very rare. Edited April 2, 2011 by peglem
dcmom Posted April 2, 2011 Author Report Posted April 2, 2011 Thanks for the replies, everyone! Just to answer some questions: She is not a carrier, she hasn't had strep since onset (2 yrs), she has been very healthy this year, she has no tonsils. Strep strain that caused pandas came with very little symptoms. This time, full blown pharyngitis symptoms, fever, malaise, etc. I do plan to re-swab, and would probably do so 7 days after course of clinda runs out (of course she will then go back on zith and augmentin). My issue is- I am expecting a severe nose dive as far as pandas symptoms go, prior to 2 weeks from now. When she had H1N1, she started in a severe episode of pandas upon recovery, we started prednisone within three days, and she fully recovered within a couple of days. My fear now, however, is how to be sure the strep is gone. Sigh. Maybe I could get doc to Rx IV antibiotics AND IV steroids..... Pmom- thanks for the heads up. You know I am on the fence about lyme, and starting treatment has made me even more of a doubter that lyme is an issue for us. I just want to follow through for another month or so. Good idea on the CBC. I do not feel good about all of these meds, especially when something like this comes up.
EAMom Posted April 3, 2011 Report Posted April 3, 2011 Hi Peg, I forgot if I asked...but are they going to culture your dd for Staph Aureus? Can they do a joint tap? Would that help? can they culture joint fluid to make sure there is no infection in the joints (is it a sterile arthritis?). http://www.netplaces.com/arthritis/the-process-of-diagnosing-arthritis/joint-aspiration.htm
peglem Posted April 3, 2011 Report Posted April 3, 2011 Hi Peg, I forgot if I asked...but are they going to culture your dd for Staph Aureus? Can they do a joint tap? Would that help? can they culture joint fluid to make sure there is no infection in the joints (is it a sterile arthritis?). http://www.netplaces.com/arthritis/the-process-of-diagnosing-arthritis/joint-aspiration.htm That has not been discussed. But, its something I'll ask her pediatrician about. She woke up this AM screaming in pain with her hands swollen and stiff. The naproxen worked in about 20 minutes to ease her discomfort. A sore erupted on the first knuckle of each hand during this-maybe from biting herself, but maybe we have a chicken and egg thing going on here- where the SIBs are triggered by something under her skin and we have been assuming the SIBs are causing the sores. She also has a sore on her forehead and the back of her head where she bangs. The sores on her hands healed pretty quickly with the clinda-even the one that hasn't really been fully healed in a coupla years. But still has the ones on her head. Last year her forehead was swabbed to culture for staph and came back negative. I think we need to try again to culture those sores.
EAMom Posted April 3, 2011 Report Posted April 3, 2011 Hi JJmom, you can definitely clear carriers...they just might be harder to clear vs. non-carriers. Azith. or Clindamyin are good abs for clearing carriers. Many PANDAS kids might be considered strep carriers (no pharyngitis or fever, don't clear strep naturally with time, or even a "normal" course of antibiotics). However, these "strep carrier PANDAS kids" aren't truly assymptomatic carriers b/c they have behavioral symptoms (tics, ocd) with their strep. The medical community has long presumed that the carrier state is benign. I don't believe this is true, and certainly not if the carrier has PANDAS (or has a PANDAS child in their family). My PANDAS dd has reacted when her younger sister has been carrying strep. And, yes, carriers can be contagious, they are just LESS contagious than someone with symtpomatic (pharyngitis, fever) strep.
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