Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 na, I can tell you how we are treating PANDAS as per Dr. K's recommendations, but I don't think there is one straight answer to your question and probably depending on with who you are consulting you may get different treatment options. First I wanted to mention that based on lab testing my son doesn't show PANDAS (strep titers normal). However based on ART testing and symptoms (last month when Dr. K ART tested him he had also severe OCD) my son has severe case of PANDAS. We had something similar in the past with parasites – lab work showed my son doesn't have any parasites. However ART testing showed he is full of parasites. So we had to treat him based only on the ART testing (also he was showing symptoms, especially around new moon) and indeed when we started the treatment protocol for parasites we saw the eggs, so indeed he had them. So back to the PANDAS – as per Dr. K's protocol he prescribes Azithromycin 500mg once per week for 6 months to 1 year. In more severe cases like ours he also recommended tonsillectomy. He said without tonsillectomy it will be very difficult my son to recover because the strep is serious blockage for him. In fact he said that the biggest reason for my son's severe apraxia (my son is still non-verbal and after 2 months he will be 6 years old) is again the strep. So for the last 1 month my son has been on the Azithromycin dose once per week and soon we are going to do tonsillectomy. We are already seeing some decrease in his OCD symptoms (he used to close all the doors, boxes, everything possibly that could be closed and cry really bad if something didin't get closed his way, also he was washing hands almost non-stop) and now this is gone. He still has some other OCD, but simply not as bad as it used to be, so he is responding to the strep protocol so far. About the strepoccocal bacteria in the yogurt. I was told to avoid any bacteria that has strepoccocal in the name. For kids with strong immune system this bacteria doesn't effect them negatively. However for kids like mine who is having already strep problems I watch very carefully any probiotics I give him. We make the young coconut kefir (with starter from BED web site, which doesn't have any strepoccocal bacteria) and Customs probiotics. These 2 tested really well for him. We are also on the LOD and the interesting part is that since we started treating the strep with Azithromycin my son can tolerate some high oxalates foods (prior to that he was reacting immediately with urinating every 10 minutes if he had by accident some " forbidden " foods). I found this very interesting, even asked on the LOD yahoo board if anybody else has seen this connection and it seems other people have seen it as well. So yes - PANDAS is related with oxalates, however how exactly – doesn't seem that anybody had the answer. Hope this helps, Krassi > > Hello, > My son (29 months) is being treated for lyme infection. He used to exhibit OCD behaviors such as lining up toys, anxiety with anyone speaking to him other me, and some repetitive sounds. Those behaviors have subsided recently and he made some very nice developmental progress. The last three days, however, I have noticed a change in his behavior going back to some of these old OCD traits plus high pitch squealing. > > We had his strep titers checked in January and they were not elevated enough for our LLMD/DAN to suspect PANDAS. Is there a possibility of having PANDAS without elevated strep titers? > > I read someone's post recently about getting strep flares when treating Bartonella. The symptoms they described were exactly like mine when treating Bartonella. I am now wondering if we don't all have strep, as well? When you are going through a " flare " is it contagious to others? > > My biggest question is, what can we do about it if it is PANDAS? What is the treatment? Looking on the web was a little discouraging as I read that only cognitive behavioral training is the treatment and that only some children respond to plasma exchange. > > My last question is if probiotics with strep strains is ok to give. We do the SCD goat yogurt using the GI ProHealth Yogurt starter. It contains strepoccocal thermo-something. > > Thank you for your help as I know many of you have treated PANDAS and I really look forward to your advice. > > PS. We recently started the low-ox diet (3 weeks ago)...could this be related to the change in his behavior? > > na- mother to ASD 2 year old w/ lyme, and 12 month old w/lyme > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 na, I too have been researching about PANDAS and strep concerning my son. Have you been to this website: http://pandasnetwork.org/ I have learned from this group to avoid streptococcus thermophilus which is found in yogurt, Probiotics, etc. Also there have been recent posts about some kids having both bartonella and strep infections and how the symptoms overlap. Try to search the archives here and on the Lyme group bc I can't recall which group it was. Sorry but hope this helps! Kari Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 na, I have also been suspecting strep/PANDAS with my son. Have you been to the pandasnetwork.org website? I have learned from this group to avoid " streptococcus thermophilus " in yogurt, Probiotics, etc. There has been a recent discussion about strep and Bartonella co infections and how the symptoms can overlap. Try to search the archives bc I don't remember If if was this group or the Lyme and co-infection group. Sorry, but hope this helps! Kari > > Hello, > My son (29 months) is being treated for lyme infection. He used to exhibit OCD behaviors such as lining up toys, anxiety with anyone speaking to him other me, and some repetitive sounds. Those behaviors have subsided recently and he made some very nice developmental progress. The last three days, however, I have noticed a change in his behavior going back to some of these old OCD traits plus high pitch squealing. > > We had his strep titers checked in January and they were not elevated enough for our LLMD/DAN to suspect PANDAS. Is there a possibility of having PANDAS without elevated strep titers? > > I read someone's post recently about getting strep flares when treating Bartonella. The symptoms they described were exactly like mine when treating Bartonella. I am now wondering if we don't all have strep, as well? When you are going through a " flare " is it contagious to others? > > My biggest question is, what can we do about it if it is PANDAS? What is the treatment? Looking on the web was a little discouraging as I read that only cognitive behavioral training is the treatment and that only some children respond to plasma exchange. > > My last question is if probiotics with strep strains is ok to give. We do the SCD goat yogurt using the GI ProHealth Yogurt starter. It contains strepoccocal thermo-something. > > Thank you for your help as I know many of you have treated PANDAS and I really look forward to your advice. > > PS. We recently started the low-ox diet (3 weeks ago)...could this be related to the change in his behavior? > > na- mother to ASD 2 year old w/ lyme, and 12 month old w/lyme > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 na, Sorry, I was meant try searching here and on the " Pandas_autism " group. Following to many groups and forgot which one I was on! Kari > > na, > > I too have been researching about PANDAS and strep concerning my son. Have you been to this website: > > http://pandasnetwork.org/ > > I have learned from this group to avoid streptococcus thermophilus which is found in yogurt, Probiotics, etc. > > Also there have been recent posts about some kids having both bartonella and strep infections and how the symptoms overlap. Try to search the archives here and on the Lyme group bc I can't recall which group it was. Sorry but hope this helps! > > Kari > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Krassi, Hi, I am a newbie here and was wondering if you can tell me a little more about ART testing. Never heard of that before. Can you tell me what the acronym stands for? Thanks! Kari > > > > Hello, > > My son (29 months) is being treated for lyme infection. He used to exhibit OCD behaviors such as lining up toys, anxiety with anyone speaking to him other me, and some repetitive sounds. Those behaviors have subsided recently and he made some very nice developmental progress. The last three days, however, I have noticed a change in his behavior going back to some of these old OCD traits plus high pitch squealing. > > > > We had his strep titers checked in January and they were not elevated enough for our LLMD/DAN to suspect PANDAS. Is there a possibility of having PANDAS without elevated strep titers? > > > > I read someone's post recently about getting strep flares when treating Bartonella. The symptoms they described were exactly like mine when treating Bartonella. I am now wondering if we don't all have strep, as well? When you are going through a " flare " is it contagious to others? > > > > My biggest question is, what can we do about it if it is PANDAS? What is the treatment? Looking on the web was a little discouraging as I read that only cognitive behavioral training is the treatment and that only some children respond to plasma exchange. > > > > My last question is if probiotics with strep strains is ok to give. We do the SCD goat yogurt using the GI ProHealth Yogurt starter. It contains strepoccocal thermo-something. > > > > Thank you for your help as I know many of you have treated PANDAS and I really look forward to your advice. > > > > PS. We recently started the low-ox diet (3 weeks ago)...could this be related to the change in his behavior? > > > > na- mother to ASD 2 year old w/ lyme, and 12 month old w/lyme > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Thanks for sharing this information. I will take a look. Just an update: We went to BioSet yesterday, which is a natural allergy elimination program. Our practitioner uses Zyto technology to test and treat. Anyways...she feels that Henry's recent changes in behavior are due to parasites, which came up as a very high sensitivity when she tested him. She didn't pick up any sensitivites to strep?! I was pretty surprised. The results were sent to our DAN/LLMD and he will determine if we should treat the parasites now. She was also able to determine that he would benefit from taking grapefruit seed extract for the parasites. I know GSE is great, but I'm curious to hear what others use to treat parasites. Is humaworm good? na > > > > na, > > > > I too have been researching about PANDAS and strep concerning my son. Have you been to this website: > > > > http://pandasnetwork.org/ > > > > I have learned from this group to avoid streptococcus thermophilus which is found in yogurt, Probiotics, etc. > > > > Also there have been recent posts about some kids having both bartonella and strep infections and how the symptoms overlap. Try to search the archives here and on the Lyme group bc I can't recall which group it was. Sorry but hope this helps! > > > > Kari > > > > Sent from my iPhone > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 Kari, ART stands for Autonomic Response Testing, which is kind of muscle testing, which Dr. K uses. You can find tons of info on Internet if you google it. I find it very accurate as it was possible to find some issues with my son that the conventional testing was not able to pick. Hope this helps, Krassi > > > > > > Hello, > > > My son (29 months) is being treated for lyme infection. He used to exhibit OCD behaviors such as lining up toys, anxiety with anyone speaking to him other me, and some repetitive sounds. Those behaviors have subsided recently and he made some very nice developmental progress. The last three days, however, I have noticed a change in his behavior going back to some of these old OCD traits plus high pitch squealing. > > > > > > We had his strep titers checked in January and they were not elevated enough for our LLMD/DAN to suspect PANDAS. Is there a possibility of having PANDAS without elevated strep titers? > > > > > > I read someone's post recently about getting strep flares when treating Bartonella. The symptoms they described were exactly like mine when treating Bartonella. I am now wondering if we don't all have strep, as well? When you are going through a " flare " is it contagious to others? > > > > > > My biggest question is, what can we do about it if it is PANDAS? What is the treatment? Looking on the web was a little discouraging as I read that only cognitive behavioral training is the treatment and that only some children respond to plasma exchange. > > > > > > My last question is if probiotics with strep strains is ok to give. We do the SCD goat yogurt using the GI ProHealth Yogurt starter. It contains strepoccocal thermo-something. > > > > > > Thank you for your help as I know many of you have treated PANDAS and I really look forward to your advice. > > > > > > PS. We recently started the low-ox diet (3 weeks ago)...could this be related to the change in his behavior? > > > > > > na- mother to ASD 2 year old w/ lyme, and 12 month old w/lyme > > > > > > Quote Link to comment Share on other sites More sharing options...
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