Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Ranee- How do you know if and when your child has PANDAS? Thank you! - Sent on the Sprint® Now Network from my BlackBerry® PANDAS Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Can PANDAS be permanently eliminated with proper treatment? Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto: ] On Behalf Of Barb Sent: Friday, April 30, 2010 10:00 AM Subject: Re: PANDAS He measures ASO and then treats with antibiotics accordingly. Barb barbkatsaros@... <mailto:barbkatsaros%40> From: Ranee <rfear@... <mailto:rfear%40cox.net> > Subject: PANDAS <mailto:%40> Date: Friday, April 30, 2010, 11:25 AM Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 He put my son on ERYped for many months until his ASO titer got down to an acceptable level (sorry I can¹t remember the numbers... it¹s been 7 years). Caroline G. Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 I've been on Ery Tab for more than a year now for strep. My titers were over 2,000 (normal 0-200). They are now down to 598. Dr. G definitely treats for it. It's amazing how much treatment can help, especially with anxiety and OCD type problems. All the best, Robyn ________________________________ From: Caroline Glover <sfglover@...> Sent: Fri, April 30, 2010 10:33:16 AM Subject: Re: PANDAS He put my son on ERYped for many months until his ASO titer got down to an acceptable level (sorry I can¹t remember the numbers... it¹s been 7 years). Caroline G. Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Dr. G pulls the labs with his intake labs. If you're already seeing him, you would know if you have a PANDAS kid. Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ On Apr 30, 2010, at 10:09 AM, erikadyan71@... wrote: > Ranee- > > How do you know if and when your child has PANDAS? > Thank you! > > - > Sent on the Sprint® Now Network from my BlackBerry® > > PANDAS > > Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 My son does not have high titers at all. He has been tested for hhv1-8 and all came back fine. However, he has actions and behaviours like I have read in PANDAS kids. He had infection early in life as he was neutropenia as an infant. He had night terrors and was on antibiotics in the first few months of life. He gets out of control when yeast becomes an issue. What is the direct link between yeast and behaviour? Aren’t we all fighting yeast – why are our kids so sensitive to them? It seems with our child that when we try something it may work for a short time and then fades. Our son has low testosterone – what could that be from? From: [mailto: ] On Behalf Of Caroline Glover Sent: April-30-10 11:10 PM Subject: Re: PANDAS Not necessarily, because he goes by symptoms as well as titers... he watched my son¹s titers for about a year, but didn¹t act upon things until he became very spaced out at school for apparently no reason. It was so bad that I pulled him out of school and sent an S.O.S. to Dr. Goldberg, who said it was time to try the antibiotics. When I sent my son back a couple of days later, his teacher called me in the middle of the day to say that it was a miracle, that he was right back on track. So the combination of high titers, symptoms and responding to the antibiotics were really what told us we had a PANDAS issue. In the first bit of time when a child starts with Dr. Goldberg, there are a lot of new meds he can prescribe... getting the antiviral going is generally a first move, followed by an SSRI, antifungal, maybe antihistamines, Tenex, etc. And the there¹s Immunovir (I¹m not sure where that falls in the order since it¹s newer addition). So even if the PANDAS idea is on the table, it may not be the first thing he opts to treat for because other issues may take precedence... Dr. Goldberg prioritizes whatever the labs and medical history lead him to believe might be the most beneficial to that particular child. I remember Dr. Goldberg saying that my son¹s titers were not as high as some of the kids¹, so maybe that¹s why he waited a while. HTH, Caroline G. From: " Cheryl L. " <cheryl.lowrance@... <mailto:cheryl.lowrance%40gmail.com> > Reply-< <mailto:%40> > Date: Fri, 30 Apr 2010 18:29:08 -0700 < <mailto:%40> > Subject: Re: PANDAS Dr. G pulls the labs with his intake labs. If you're already seeing him, you would know if you have a PANDAS kid. Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 There are a couple of labs that can be helpful - Streptolysin and DNAse antibody I think but as someone else mentioned it can also be diagnosed based on history and symptoms so the labs are not 100%. The most common symptom I know about is OCD behavior. > > Ranee- > > How do you know if and when your child has PANDAS? > Thank you! > > - > Sent on the Sprint® Now Network from my BlackBerry® > > PANDAS > > Has anyone addressed PANDAS in their child with Dr. G? Can you tell me what his take is on it and how he treats it (or doesn't treat it)? thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 I think you should get your son to a good endocrinologist regarding testosterone levels. You do not have to have high titers to have PANDAS, even according to the NIMH. For the most part, there needs to be a connection between certain types of behavior (OCD and/or tics) and strep A infection. Here is a link that gives an overview: http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-q uestions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-wi th-streptococcal-infections.shtml It is a good reference to give docs who still do not believe that PANDAS exists because it is from the NIH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2010 Report Share Posted September 18, 2010 It doesn't have to be the ASO. My son's ASO was never above 120. HIs antiDNase B is always the biggie for him. When he got his first PANDAS profile (test no longer exists but measure MBP and other antibrain antibodies) my son's was the worst that 2 big named DAN doctors and one of the countries best immunologists have ever seen, and again, his ASO was in normal range at the time that test was run. Prophylactic doses is what has kept my son's PANDAS from flaring Kerrie In a message dated 9/18/2010 10:46:56 A.M. Eastern Daylight Time, thecolemans4@... writes: Really, any time the ASO titer is elevated, he should be on eryped or something similar until it comes down, not just giving the med when it flares up. Quote Link to comment Share on other sites More sharing options...
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