KnoraT Posted January 24, 2013 Report Share Posted January 24, 2013 Hello all, We just had a pandas consultation with Dr Kovacevic about my 2.5year old son who has PDD-NOS. His symptoms are always changing and he seems to get sick with flu a lot followed by regressions but he never had a positive strep. Dr Kovacevic put him on 2 week antibiotic course to see if it changes any symptoms. It's only been 1 week and we have seen some improvement in social aspect but his 'behaviours' are getting worse.....more stimming and hyperactivity! Does this mean he doesn't have pandas? We are still waiting for the results of tests that were ordered. Is there anyone else with similar experience....does initial course of antibiotic change much? Thanks for response I advance! Link to comment Share on other sites More sharing options...
Tamistwins Posted January 24, 2013 Report Share Posted January 24, 2013 I have a 3.5 yr old with pandas who seemed worse on Zithromax. It may be the dye too. You can ask him to switch antibiotics, it doesn't mean your son does not have pandas. Link to comment Share on other sites More sharing options...
pr40 Posted January 24, 2013 Report Share Posted January 24, 2013 (edited) you could try steroids as well. very few kids seem to have sudden improvement. if there is any, improvement is saw-toothed. why only 2 weeks on abx? Edited January 24, 2013 by pr40 Link to comment Share on other sites More sharing options...
3boysmom Posted January 25, 2013 Report Share Posted January 25, 2013 (edited) Also look into this: http://www.mitoaction.org/files/AlyssaDavi.pdf linda Edited January 25, 2013 by 3boysmom Link to comment Share on other sites More sharing options...
peglem Posted January 25, 2013 Report Share Posted January 25, 2013 Are you using probiotics? Yeast makes my daughter hyperhyperhyper! Also, many kids are triggered by viruses as well as bacteria. So you might try adding or increasing probiotics. Link to comment Share on other sites More sharing options...
hugs2day Posted January 25, 2013 Report Share Posted January 25, 2013 My older son did not get better with Azithro. When doc switched to PennVK he got better within 3 days. He was pretty bad off at the time so it was very obvious the pennvk was working. Try another antibiotic and see if you can get an antifungal too to cover the yeast and probitocs. Link to comment Share on other sites More sharing options...
KnoraT Posted January 25, 2013 Author Report Share Posted January 25, 2013 (edited) We asked the Dr to prescribe Zithromax because other antibiotics had stopped working(resistance??) when he had chronic ear infections as a baby. He has gut issues since he was little and antbx are making things worse even with probiotic we give him twice daily(florastor)... He does have a lot of symptoms of mito so that could be the reason antbx aren't working...we have an appt with a geneticist next month so have to wait for that... He's on 2 week on antbx for a trial...we have yet to receive results for pandas lab work....I'm nervous abt putting him on steroids because he's so little, only 2.5 yrs old. Are there any side affects?? Thanks Edited January 25, 2013 by KnoraT Link to comment Share on other sites More sharing options...
hugs2day Posted January 26, 2013 Report Share Posted January 26, 2013 If he has gut issues steroids could turn on him they cause yeast. With kiddos that are sick a lot like mine and (sounds like your too since a young age) steroids can go either way. Went south for my son. I still might try steroids again later after cleared all these infections but I agree he is too young and more tests need to be done to rule out infections. You might want to try Flagyl and Diflucan, it could be gut issues triggering the pans. that has been the case more than once for my son. Also are you using any supplements? Link to comment Share on other sites More sharing options...
smartyjones Posted January 26, 2013 Report Share Posted January 26, 2013 (edited) my son had a absolutely horrible time with azith when first on it for pandas. he had sudden onset, high titers and a positive culture. he was put on 5 days of azith and it was awful. he had had some improvement in behaviors and all returned with a vengenance. about a month and a new ped later, he was put on 30 days of keflex and had 100% remission in about 3 days. unfortunately, it didn't hold about 30 days off abx. we later discovered multiple infections - many viral and lyme. i believe lyme is part of his 'cocktail' of infections but not a major symptom producer. i have heard azith can cause a herx for people with lyme. i don't know if it was this it or if he just had a hard time with zith. i doubt i will ever have him on it again to find out. i don't know that i would think trouble or non-response to one abx would be enough to say not pandas -- i think it would have to be not a response at all to multiple abx. and even then, there could be many other factors as well -- such as PANS triggered by viral issues, which has an infectious root but wouldn't expect to be mediated by abx. Edited January 26, 2013 by smartyjones Link to comment Share on other sites More sharing options...
KnoraT Posted January 28, 2013 Author Report Share Posted January 28, 2013 Thanks guys. He's on regular multivitamin and Omega 3 supplements. Its day 11 on zithro and DS's ocd has gotten worse...I see some age regression, hyperactivity, and lots of stimming behaviors....He is more social though and talking more...Steroids will start in a week probably, I will up the probiotics to make sure yeast is in control!! Link to comment Share on other sites More sharing options...
LNN Posted January 28, 2013 Report Share Posted January 28, 2013 Before you increase Florastor, try changing your probiotic. Florastor is Sacc. Boullardi, which is in the yeast family. It's supposed to be "good" yeast but my son does horrible on this. It's as if he has a yeast infection - we see increased anger, impulsivity, hyperness, inappropriate behavior. When we switched probiotics, he improved greatly. Try switching to a blended probiotic that has multiple strains in it. We use Truflora, Theralac and Ultimate Flora - we rotate all three during the week. Make sure you give the probiotics at least 2 hrs away from the antibiotic, preferably when stomach acids are low (at bedtime or at least an hour after a meal). This gives the probiotics a better chance of surviving the journey thru the stomach and actually ebing alive when they get to the intestines. Link to comment Share on other sites More sharing options...
KnoraT Posted February 12, 2013 Author Report Share Posted February 12, 2013 (edited) Hi, I wanted to report back the results of 14 day antibiotics...he actually did really good, he was concentrating more, talking, and engaging with other kids so well!! BUT, the results of the PANDAS blood tests are all negative..:S Dr. still suspects PANDAS so we did steroid burst. I will post about steroid burst in another thread as I need some insight from others as I'm really confused! Edited February 12, 2013 by KnoraT Link to comment Share on other sites More sharing options...
3boysmom Posted February 12, 2013 Report Share Posted February 12, 2013 (edited) There is no such thing as " all the blood work for PANDAS" . Unless they are ONLY looking for high titers to strep! That is why a specialist in this disorder is so valuable... They get it AND that is why the name was changed to PANS.... The " trigger" can very well be a different infection that triggered this mess! For 3 years now, I was convinced that our DS was straight PANDAS until he had another major flare 2 months ago and none of the trusted antibiotics worked at all this time.... Blood work found Coxsackie Virus and when put on anti- virals, he then began to come out of the flare. My point-there is a good chance that the infection trigger has not yet been found, but there is NO WAY that "all the tests have been run"!!! Don't let them point you off the path... Keep looking, linda j know that Dr. K is a PANDAS doctor, but is he looking for other things besides strep? Edited February 12, 2013 by 3boysmom Link to comment Share on other sites More sharing options...
KnoraT Posted February 12, 2013 Author Report Share Posted February 12, 2013 There is no such thing as " all the blood work for PANDAS" . Unless they are ONLY looking for high titers to strep! That is why a specialist in this disorder is so valuable... They get it AND that is why the name was changed to PANS.... The " trigger" can very well be a different infection that triggered this mess! For 3 years now, I was convinced that our DS was straight PANDAS until he had another major flare 2 months ago and none of the trusted antibiotics worked at all this time.... Blood work found Coxsackie Virus and when put on anti- virals, he then began to come out of the flare. My point-there is a good chance that the infection trigger has not yet been found, but there is NO WAY that "all the tests have been run"!!! Don't let them point you off the path... Keep looking, linda j know that Dr. K is a PANDAS doctor, but is he looking for other things besides strep? Oh ok. We are very new to this but I feel that my son's regressions are all related to some virus or bacteria but the problem is how to find it? I have read about dr K on this forum and he seems to be well respected and is one of the top PANDAS doctors. He ran several tests, some were immune related IGG and IGM but came out negative.....we will go back to him in 2 weeks. He might do some other tests but I'm not sure. Link to comment Share on other sites More sharing options...
pr40 Posted February 12, 2013 Report Share Posted February 12, 2013 our kids's tests were all fine as well. you'll find that this is the case at times. I am not sure how to explain it except the obvious that there is no test for PANDAS yet. our dd9 ASO was at 1:360 at one point and that was it. In a simplistic view, if anti-inflammatory help -- and you can count abx as doing the work of anti-inflammatory -- the problem you are dealing with is auto-immune. whether you call it PANDAS or not seems to matter less. As with other auto-immune problems like arthritis, regiment is already established. Link to comment Share on other sites More sharing options...
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