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  1. My son had Scarlatina (a form of strep) and had a sandpaper like rash as well. He didn't have a fever either but lots of behavioural symptoms. Things were much better after the antibiotics
  2. Funny. I just heard back from my son's doctor and she said the same thing, that is was because of a recent strep exposure and not to worry.
  3. Hi, My 10years old PANDASson suffers from skin peeling as you describe it, every time he has been exposed to strep. The doctors have told me that the skin peeling and PANDAS is "somehow related ... but I am not to worry". Haha :-(
  4. Has anyone dealt with this before? My son has huge chunks of skin peeling off the bottoms of his feet and between his toes. Is it possibly related to PANDAS or something I should be concerned about?
  5. Thank you so much. I have been reseaching Lyme Disease for the last 2 days non stop and am definately going to explore this. My gut tells me this is it.......when I look back over the past few years it all is starting to make sense. My son definately has a chronic infection of some kind. I have pictures of rashes he's had over the years (usually when he is on an antifungal-so I always attributed them to die off) that look very similar to one of the rashes I saw on the autism-induced-lyme website you included in your response. I hate to say that I am excited that my son could possibly have Lyme Disease but now I feel like if we know what we are dealing with we can really help him. I will be talking to my son's ped today. Thank you so much........
  6. Hi Kim, Thanks for your reply. You're right. My son was dx with Autism at 2 PANDAS at 6 (Nov 2010). Thanks for taking the time to piece together my posts. My son's ped is a DAN doctor but doesn't have a lot of experience with PANDAS. Here is a brief summary of our PANDAS journey: At 4 our ped suspected PANDAS at an appt we had when she saw some of my son's 'cycling' behaviours. She took a throat swab. It came back negative and we moved away from looking into PANDAS. We treated Clostridia with Flagyl and saw huge gains. 2 years later our ped realized that my son's beh always increased after a sickness. She speculated that we saw such improvement from Flagyl because we may have been indirectly treating PANDAS. We decided to treat my son with antibiotics. 5 days of 200mg of azith followed by 80 mg 3X week. We saw gains, especially with anxiety and OCD behaviours. In Jan 2011 after doing some exploring into PANDAS I read that a steroid burst could help. She agreed to try and we had the reaction I described. PANDAS beh worsened in Feb and we treated with azith 10 days 80mg a day. My son developed scarlitina and we gave him 10 days of penicillin 450mg 2X day (beginning of Mar). We saw huge improvements. A few weeks after he developed a coughing tic. 5 more days of 80mg azith a day. We have been on a maintenance dose of azith since. Recently, we have seen evidence of scarlitina (rash and a resurfacing of beh) and have been prescibed penicillin again. I have looked into seeing Dr K but we are in Canada....... have also thought of possibly seeing Dr. Bock. Some of the behaviours my son exhibits are: urinary frequency (sometimes going every 10 min) OCD beh (repeating the same thing over or doing some routine a certain way over and over) coughing tic (short cough every 5 seconds) one summer he refused to leave the house for 3 weeks obsessed with where I am, where I am going....... dilated pupils when he is 'cycling' Any other suggestions/advice would be greatly appreciated. Sorry for the lengthy response. Anita
  7. I was wondering if anyone else has had a bad reaction to prednisone. My son completely flipped out on day 3. The best way I could describe his behaviour was mania. He was crying, saying the same phrase over and over and over, became aggressive....... Our ped told us to stop immediately. He was fine the next day. Does this mean my son is not a good candidate for IVIG? We had a similar reaction to Sporonox when we were treating yeast overgrowth. I don't know if this is related or not.
  8. Thank you we are newly diagnosed so that information is extremely helpful. Our ped said that penicillin is considered the 'gold standard' against strep and that is why she prescribed it. My son is her first PANDAS patient so we are both in new territory here. She is very open and I know will listen to what I have to say. I will take this info back to her. Thanks again.
  9. My 7 year old son has Scarlatina again and was prescribed 2 weeks of penicillin twice a day followed by 5 days of a single dose of penicillin and then azithromycin 80 mg 3X week for 4 weeks. Does this sound right? I just haven't read of anyone using penicillin.
  10. Thanks Nancy. I have already found this Forum extremely helpful and am looking forward to learning more. It is so great to be able to connect with others who are going through the same thing.
  11. I know it can seem overwhelming, especially changing "horses" in the middle of the stream, as it were. We were in a similar boat a couple of years ago, having been immersed in an OCD diagnosis and all that comes with it for nearly 6 years prior to PANDAS. But it gets easier, and all the folks here on the forum can be great resources for you as they've been for us. As you have the time and energy, I would paw through the Pinned Threads at the top of this PANDAS forum for some of the basic information and some treatment protocols that have worked well for other families. Many others here also use biomed responses to help keep their kids healthy and to respond to strep exposures. Natural anti-inflammatory supplements are also a favorite, and you'll find lots of threads here regarding items like curcumin, tumeric, quercitin, Vitamin D3, fish oil, and probiotics. Good luck to you!
  12. Thank you for sharing. I too have spent the last few months wondering if what we thought was Autism has been PANDAS all along. My son never progressed typically. He had many infections (pneumonia, ear infections,etc.) in the first year and a half and never spoke. He was diagnosed with severe Autism. Fortunately, with biomedical interventions he began to get healthy, speak, read (is hyperlexic) and finally in the last year and a half play. He is in Grade One in a regular classroom with an EA and is successfully working on grade level expectations. We were thrilled but..........he continued to be extremely agitated at times, would go through periods where he wouldn't leave the house for 3 weeks, cough every 10 seconds, eat the same 3 foods for months and months, exhibit other OCD behaviours and have bouts of frequent urination (going every 10 minutes some days). I don't know how many times over the years we had him tested for UTI's. Then came the PANDAS diagnosis. I didn't believe it at first. My head was so consumed with the Autism thing but when we started the antibiotics (which was difficult, since we had spent the last 4 years trying to avoid taking them) we were convinced. The worst of his symptoms disappeared. We took my son on a trip to Disney World at Christmas when just a few months before we didn't dare take him to the grocery store. It all has been very amazing and extremely exhausting. I am wondering what this PANDAS path looks like. Do we treat an exacerbation and then just wait and hold our breath until another one consumes us....??? Are there any supplements etc that I can give my son to give him a fighting chance? I have read that kids are exposed to strep 11 times a year.
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