Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 I just made an appointment to get my son tested for PANDAS. He fits all the criteria and after a long healthy period is showing signs of OCD and hand writing difficulty again. I'm also pretty sure he had Scarlet Fever, but only shown through pictures as a friend nurse at the time convinced us that he just had rosacea (sp?). Strep. A infection is documented in his medical history and step. circulates through are family at least 1 time a year hanging around for months. Lastly he also had a tic disorder that he had recovered from that seemed largely due to milk allergy. I'm a little uneasy as what to expect as there is so much controversy in the medical world as to what PANDAS even is and especially on how to treat it. My personal thoughts from reading parent's testimonials is that IVIG treatment has been beneficial. I don't like the idea of once one has scarlet fever that the effects of strep. can be so detrimental that they put the child on antibiotics for the rest of his life as a preventative measure. Lastly I heard there was a specific antibiotic that parents used short term and were successful. I need to find the name of that. It was the parent author of the book I believe is called Saving Sammy. Any information or advice would greatly be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 For good PANDAS info go to www.pandasnetwork.org There is no test for PANDAS since 50% of the kids who have PANDAS do not have high ASO/DNASE titers. A good PANDAS doc will treat based on symptoms alone and not just titers. The first line of treatment is to try antibiotics either azithromycin or augmentin. Augmentin can be tough on the gut. Also give lots of good probiotics since you may be on the antibiotics long term. Antibiotics do kill the good bacteria in the gut as well as the bad so you may also need an antifungal like diclucan and definetly need good probiotics (we like Custom Probiotics). If the antibiotics alone do not bring relief the next line of treatment is to try a steroid burst of prednisone for 5 days in high dose (1mg/kg of body weight). You do not need to taper down if only on it for a few days. My son was on high dose steroids for 4 weeks so we had to taper down the dose for another 4 weeks to let the body get used to making cortisol again. If the antibiotics and steroids do not bring relief IVIG is tried. It is tough to get IVIG covered by insurance and it is very expensive. Some kids do well with one IVIG treatment and others need to get IVIG treaments every 2 to 4 weeks for years. Hope this helps! To: EOHarm Sent: Thursday, February 16, 2012 10:42 AMSubject: PANDAS??? I just made an appointment to get my son tested for PANDAS. He fits all the criteria and after a long healthy period is showing signs of OCD and hand writing difficulty again. I'm also pretty sure he had Scarlet Fever, but only shown through pictures as a friend nurse at the time convinced us that he just had rosacea (sp?). Strep. A infection is documented in his medical history and step. circulates through are family at least 1 time a year hanging around for months. Lastly he also had a tic disorder that he had recovered from that seemed largely due to milk allergy.I'm a little uneasy as what to expect as there is so much controversy in the medical world as to what PANDAS even is and especially on how to treat it.My personal thoughts from reading parent's testimonials is that IVIG treatment has been beneficial. I don't like the idea of once one has scarlet fever that the effects of strep. can be so detrimental that they put the child on antibiotics for the rest of his life as a preventative measure. Lastly I heard there was a specific antibiotic that parents used short term and were successful. I need to find the name of that. It was the parent author of the book I believe is called Saving Sammy.Any information or advice would greatly be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 Thank you for filling me in. When you look up PANDAS on wikipedia they state that IVIG treatment " should be " reserved for severely ill patients " and should not be undertaken outside of formal clinical trials. " It's weird...it seems pretty " severely ill " when every time your exposed to strep. on a yearly basis that your body starts attacking your brain tissue. Also I did find that they are recruiting for IVIG treatment clinical trials. Again I appreciate everything you have shared, Mia > > For good PANDAS info go to www.pandasnetwork.org There is no test for PANDAS since 50% of the kids who have PANDAS do not have high ASO/DNASE titers. A good PANDAS doc will treat based on symptoms alone and not just titers. >  > The first line of treatment is to try antibiotics either azithromycin or augmentin. Augmentin can be tough on the gut. Also give lots of good probiotics since you may be on the antibiotics long term. Antibiotics do kill the good bacteria in the gut as well as the bad so you may also need an antifungal like diclucan and definetly need good probiotics (we like Custom Probiotics). >  > If the antibiotics alone do not bring relief the next line of treatment is to try a steroid burst of prednisone for 5 days in high dose (1mg/kg of body weight). You do not need to taper down if only on it for a few days. My son was on high dose steroids for 4 weeks so we had to taper down the dose for another 4 weeks to let the body get used to making cortisol again. >  > If the antibiotics and steroids do not bring relief IVIG is tried. It is tough to get IVIG covered by insurance and it is very expensive. Some kids do well with one IVIG treatment and others need to get IVIG treaments every 2 to 4 weeks for years. >  > Hope this helps! >  > > > > To: EOHarm > Sent: Thursday, February 16, 2012 10:42 AM > Subject: PANDAS??? > > >  > I just made an appointment to get my son tested for PANDAS. > He fits all the criteria and after a long healthy period is showing signs of OCD and hand writing difficulty again. > I'm also pretty sure he had Scarlet Fever, but only shown through pictures as a friend nurse at the time convinced us that he just had rosacea (sp?). Strep. A infection is documented in his medical history and step. circulates through are family at least 1 time a year hanging around for months. Lastly he also had a tic disorder that he had recovered from that seemed largely due to milk allergy. > I'm a little uneasy as what to expect as there is so much controversy in the medical world as to what PANDAS even is and especially on how to treat it. > My personal thoughts from reading parent's testimonials is that IVIG treatment has been beneficial. I don't like the idea of once one has scarlet fever that the effects of strep. can be so detrimental that they put the child on antibiotics for the rest of his life as a preventative measure. Lastly I heard there was a specific antibiotic that parents used short term and were successful. I need to find the name of that. It was the parent author of the book I believe is called Saving Sammy. > Any information or advice would greatly be appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2012 Report Share Posted February 17, 2012 While my son does not have PANDAS, he has some immune abnormalities that cause him to be sick all the time, but are not considered severe enough for IVIG or even subcutaneous IG. I took matters into my own hands witha product ( only after I did a lot of research!) called Xymogen IGG 2000 XF, by Xymogen. Illness has been reduced drastically for him. At his next doct. appt, I will be asking for some immune testing to see where we are today compared to before. I have no stake, financial or otherwise in Xymogen. I am just a consumer who has had a good experience with it. > > > > For good PANDAS info go to www.pandasnetwork.org There is no test for PANDAS since 50% of the kids who have PANDAS do not have high ASO/DNASE titers. A good PANDAS doc will treat based on symptoms alone and not just titers. > >  > > The first line of treatment is to try antibiotics either azithromycin or augmentin. Augmentin can be tough on the gut. Also give lots of good probiotics since you may be on the antibiotics long term. Antibiotics do kill the good bacteria in the gut as well as the bad so you may also need an antifungal like diclucan and definetly need good probiotics (we like Custom Probiotics). > >  > > If the antibiotics alone do not bring relief the next line of treatment is to try a steroid burst of prednisone for 5 days in high dose (1mg/kg of body weight). You do not need to taper down if only on it for a few days. My son was on high dose steroids for 4 weeks so we had to taper down the dose for another 4 weeks to let the body get used to making cortisol again. > >  > > If the antibiotics and steroids do not bring relief IVIG is tried. It is tough to get IVIG covered by insurance and it is very expensive. Some kids do well with one IVIG treatment and others need to get IVIG treaments every 2 to 4 weeks for years. > >  > > Hope this helps! > >  > > > > > > From: mia_brk <mia_brk@> > > To: EOHarm > > Sent: Thursday, February 16, 2012 10:42 AM > > Subject: PANDAS??? > > > > > >  > > I just made an appointment to get my son tested for PANDAS. > > He fits all the criteria and after a long healthy period is showing signs of OCD and hand writing difficulty again. > > I'm also pretty sure he had Scarlet Fever, but only shown through pictures as a friend nurse at the time convinced us that he just had rosacea (sp?). Strep. A infection is documented in his medical history and step. circulates through are family at least 1 time a year hanging around for months. Lastly he also had a tic disorder that he had recovered from that seemed largely due to milk allergy. > > I'm a little uneasy as what to expect as there is so much controversy in the medical world as to what PANDAS even is and especially on how to treat it. > > My personal thoughts from reading parent's testimonials is that IVIG treatment has been beneficial. I don't like the idea of once one has scarlet fever that the effects of strep. can be so detrimental that they put the child on antibiotics for the rest of his life as a preventative measure. Lastly I heard there was a specific antibiotic that parents used short term and were successful. I need to find the name of that. It was the parent author of the book I believe is called Saving Sammy. > > Any information or advice would greatly be appreciated. > > > Quote Link to comment Share on other sites More sharing options...
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