Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 How does Dr. G treat children who are PANDAS kids? Does he recommend ivig or does he use other ways? Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Hi , The protocol does treat PANDAS. Mostly the same meds, but also long-term antibiotics - whichever work better for the child (often erythromycin or ery-ped), depending on the ASO titers. He never recommends IVIG except in extreme cases of immune deficiencies that demand it. He has used IMGG (intramuscular shots) but I haven't heard anyone asking about it for some time, so I don't know if he does anymore - except maybe in cases of low IgG... He has also started using Immunovir, and I believe many (most?) PANDAS kids have low natural killer cells, and immunovir helps increase them. These are some of the immune cells that down-regulate the immune system. I know studies have been published associating low NKs to OCD and anxiety - but I don't know if the general researchers who study PANDAS are looking into that aspect or not. They tend to look at PANDAS under the paradigm of an autoimmune attack, whereas is addressing the immune dysfunction associated with it, and possibly the triggers. Strep may be a trigger, but how much do viruses impact it by their suppression of proper immune function and proper down-regulation from the production of ASO? Diet can exacerbate it too. (I have PANDAS too.) HTH ________________________________ From: and Freeman <freemanbk@...> Sent: Thu, November 25, 2010 5:01:29 PM Subject: PANDAS and NIDs  How does Dr. G treat children who are PANDAS kids? Does he recommend ivig or does he use other ways? Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2010 Report Share Posted December 1, 2010 , why anticardiolipin antibodies? Does he suspect Lyme? > > Thank you, . > > > > is now being tested for his anticardiolipin antibodies because of neutropenia and high lymphs. The immune specialist here does not believe in Dr. Cunningham’s CamKinase test mostly because he did not test positive for strep titers. Their lab confirms that the levels can be elevated by many factors including viral, bacterial infections and Lyme. He is currently on Azithromycin 250mg daily and low dose Lexapro. He did well on low dose Risperidone but had to discontinue because it made his neutrophils go even lower. > > > > > > > > From: [mailto: ] On Behalf Of > Sent: November-30-10 9:53 PM > > Subject: Re: PANDAS and NIDs > > > > > > Hi , > The protocol does treat PANDAS. Mostly the same meds, but also long-term > antibiotics - whichever work better for the child (often erythromycin or > ery-ped), depending on the ASO titers. > He never recommends IVIG except in extreme cases of immune deficiencies that > demand it. He has used IMGG (intramuscular shots) but I haven't heard anyone > asking about it for some time, so I don't know if he does anymore - except maybe > in cases of low IgG... > > He has also started using Immunovir, and I believe many (most?) PANDAS kids have > low natural killer cells, and immunovir helps increase them. These are some of > the immune cells that down-regulate the immune system. I know studies have been > published associating low NKs to OCD and anxiety - but I don't know if the > general researchers who study PANDAS are looking into that aspect or not. They > tend to look at PANDAS under the paradigm of an autoimmune attack, whereas > is addressing the immune dysfunction associated with it, and possibly the > triggers. Strep may be a trigger, but how much do viruses impact it by their > suppression of proper immune function and proper down-regulation from the > production of ASO? Diet can exacerbate it too. (I have PANDAS too.) > > HTH > > > ________________________________ > From: and Freeman <freemanbk@... <mailto:freemanbk%40ns.sympatico.ca> > > <mailto:%40> > Sent: Thu, November 25, 2010 5:01:29 PM > Subject: PANDAS and NIDs > > > How does Dr. G treat children who are PANDAS kids? Does he recommend ivig or > does he use other ways? > > Thank you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Depending on what symptoms your son is having, other bacteria can also aggrevate symptoms just like PANDAS, just usually not to the severity that strep does. Mycoplasma pneumonia &  staph (which can both be chronic and subtle) do it at about 1/2 the 'force' of strep. Lyme would too. Also, probiotics can exacerbate it too, especially culturelle or multi-strains that contain L Rhamusus (sp?). Ultimately, though, something else is likely the cause of PANDAS. I really believe that the immune system is dysfunctional *before* strep sets off PANDAS. I believe it's already in a state of . The sad truth is, though, pandas is a slow fix just like the spectrum issues. I've been struggling for years now - since 2003, and my aso recently shot back up and I had intense symptoms all over again. But a change in antibiotics and a new med brought me back into functioning range again and the storm has definitely passed. Not fixed- not cured, but way better. (I'm taking amantadine right now, and it is very calming to my whole system. Not a med Dr G uses, I assume, but it's saving my mind and my ability to work, so I'm sticking with it for a while.) HTH ________________________________ From: and Freeman <freemanbk@...> Sent: Tue, November 30, 2010 8:33:56 PM Subject: RE: PANDAS and NIDs  Thank you, . is now being tested for his anticardiolipin antibodies because of neutropenia and high lymphs. The immune specialist here does not believe in Dr. Cunningham’s CamKinase test mostly because he did not test positive for strep titers. Their lab confirms that the levels can be elevated by many factors including viral, bacterial infections and Lyme. He is currently on Azithromycin 250mg daily and low dose Lexapro. He did well on low dose Risperidone but had to discontinue because it made his neutrophils go even lower. From: [mailto: ] On Behalf Of Sent: November-30-10 9:53 PM Subject: Re: PANDAS and NIDs Hi , The protocol does treat PANDAS. Mostly the same meds, but also long-term antibiotics - whichever work better for the child (often erythromycin or ery-ped), depending on the ASO titers. He never recommends IVIG except in extreme cases of immune deficiencies that demand it. He has used IMGG (intramuscular shots) but I haven't heard anyone asking about it for some time, so I don't know if he does anymore - except maybe in cases of low IgG... He has also started using Immunovir, and I believe many (most?) PANDAS kids have low natural killer cells, and immunovir helps increase them. These are some of the immune cells that down-regulate the immune system. I know studies have been published associating low NKs to OCD and anxiety - but I don't know if the general researchers who study PANDAS are looking into that aspect or not. They tend to look at PANDAS under the paradigm of an autoimmune attack, whereas is addressing the immune dysfunction associated with it, and possibly the triggers. Strep may be a trigger, but how much do viruses impact it by their suppression of proper immune function and proper down-regulation from the production of ASO? Diet can exacerbate it too. (I have PANDAS too.) HTH ________________________________ From: and Freeman <freemanbk@... <mailto:freemanbk%40ns.sympatico.ca> > <mailto:%40> Sent: Thu, November 25, 2010 5:01:29 PM Subject: PANDAS and NIDs How does Dr. G treat children who are PANDAS kids? Does he recommend ivig or does he use other ways? Thank you. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.