Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 another is to treat wtih OLE, we have eliminated ours that way as well as several others I know of. way less invassive, Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 how much OLE would you suggest for a 38 pound child? Re: PANDAS Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Hi Pamela, Yes we do have a DAN! doctor but he does not know anything about PANDAS. He even checked my sons throat and said they looked normal. That is why I'm so concerned about him having a tonsillectomy. He never has strep throat just high strep titers. His throat looks normal and the Doctor feels the strep is embedded down in the tonsils. I'm just making sure that is the only place the bacteria can be. But from reading some of these posts, it sounds like it can be in the gut also. Christypamelaleigh@... wrote: Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Christel, I had read one of your earlier responses about OLE and I had some in my cabinet. How much would you recommend giving a child that weighed 38 pounds? ChristyChristel King wrote: another is to treat wtih OLE, we have eliminated ours that way as well as several others I know of. way less invassive, Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 we did 500 mgs 3 times a day. he weighed 40 pounds Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 You have to hope that the OLE will kill off any strep remaining in the body and that the antibodies will settle down once their is nothing left for them to react to. The problem with some PANDAS kids is that the anti brain antibodies (tubulin, myelin basic proteins, gangliosides) just keep going and fighting the brain even when the strep is gone. We've done 4 shots of Bicillin, 30 days of zithromax and have done OLE 750mg 3x a day since December and my son's numbers continue to go up. We've just started IVIG and I hope it does the trick because nothing else is helping. Kerrie So what does the OLE do? Does it kill the strep? I know I have been doing some reading about IVIG for removing the antibodies. Is that the only way? Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Thank you . It's been a really hard and long 8 months with him. I know some people are doing IVIG to help with autism and don't have IVIG and are seeing results. I've had 2 different doctors tell me that. We never would have considered IVIG as a treatment for my son for his autism alone due to the cost. We were put in a position where we HAD to do it. I'm just hoping that the horrible PANDAS turns out to be a blessing in disguise and that he not only recovers from his PANDAS, but that it helps with the autism too. We were told by our doctor that insurance wouldn't cover it for my son. We paid cash for his first treatment at that doctor's office and for the heck of it submitted for out of network coverage. They reimbursed half. I just called and asked for a coded receipt from the company doing our IVs at home and we'll see what happens. I'm hoping that the fact that IVs keep getting cheaper for us (quoted $3800 for first IV which ended up costing $2700, then our home IVs are $2200 and we just hot half back) that it means it was meant to be. That finally we are catching a break. I appreciate the thoughts and prayers, and the continued support from everyone on the yahoo groups. I couldn't get through this without you all. Kerrie This is also my prayer for you, keep us posted. Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 So what does the OLE do? Does it kill the strep? I know I have been doing some reading about IVIG for removing the antibodies. Is that the only way?Christel King wrote: strep for PANDAS isn't actually strep in one place, it's all over triggering anti, antibodies to strep that attack the brain, so removing the tonseils aren't going to change that Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: Re: PANDAS Hi Pamela, Yes we do have a DAN! doctor but he does not know anything about PANDAS. He even checked my sons throat and said they looked normal. That is why I'm so concerned about him having a tonsillectomy. He never has strep throat just high strep titers. His throat looks normal and the Doctor feels the strep is embedded down in the tonsils. I'm just making sure that is the only place the bacteria can be. But from reading some of these posts, it sounds like it can be in the gut also. Christypamelaleighcomcast (DOT) net wrote: Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 ----- Original Message ----- From: ratlenhum@... We've just started IVIG and I hope it does the trick because nothing else is helping. ====>Kerrie, This is also my prayer for you, keep us posted. Kerrie In a message dated 6/5/2008 11:02:31 A.M. Eastern Daylight Time, scdh04 writes: So what does the OLE do? Does it kill the strep? I know I have been doing some reading about IVIG for removing the antibodies. Is that the only way? Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 it addresses bacteria for one, and viral issues, and helps in many cases with allergies and the immune system. for many that have NOT responded to 3-4 rounds of antibotics to fight PANDAS it has been the ONLY thing to bring those numbers on ASO and the other marker for PANDAS down to way below normal ranges Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: Re: PANDAS Hi Pamela, Yes we do have a DAN! doctor but he does not know anything about PANDAS. He even checked my sons throat and said they looked normal. That is why I'm so concerned about him having a tonsillectomy. He never has strep throat just high strep titers. His throat looks normal and the Doctor feels the strep is embedded down in the tonsils. I'm just making sure that is the only place the bacteria can be. But from reading some of these posts, it sounds like it can be in the gut also. Christypamelaleighcomcast (DOT) net wrote: Hi Christy, Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. Pamela No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: 6/5/2008 10:07 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 How do you get rid of the gamma strep? Re: Re: PANDAS the therory I put out there was a few things, I had been noticing a corolation in kids showing gamma strep on stool testing when using probotics with strep lines in it and that kids showing this on stool tests seem to be creating antibodies to strep showing up as PANDAS> what tests did he do to rule out PANDAS? thanks for the feed back I am tring togather as much info as possible, also what type of probotic are you using as well Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my BLOGs at http://www.myspace.com/christelking http://foggyrock.com/MyPage/recoveringwishes Re: PANDAS I know there was a thread about this last week or the week before, but I'm still a little confused. 's DAN! tested him for PANDAS...said it wasn't a problem. but the imbalances in his gut listed strep. So did my other son's and so did mine. Christel...I think you thought that they could. what would I do about it? OLE? How much? my kids are 3.5 and almost 6. about 40 and 50 lbs. we're getting ready to start brainchild yeast protocol. with candex, cell food, biocidin, oregon grape extract, garlic. will any of that help with strep? Thanks, Kari > > Hi Christy, > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > probably be your best choice to treat PANDAS. Tonsillectomy is one > treatment option. For some children, the strep lies in their > tonsils. Does your child have enlarged tonsils? That can be an > indication. Other treatment options include low dose maintenance > antibiotics and IVIG. > > > > Pamela > > > > > > > > ---------------------------------------------------------- > ------- > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ----------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > 6/5/2008 10:07 AM > > > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM Stay informed, get connected and more with AOL on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Christel it is funny that you mentioned probiotics. I was just looking at my son's probiotics this on Friday and for some reason I started reading the ingredients. I noticed the last line was Streptococcus thermophilus. Can this be what is keeping his strep titers high? I have taken him off and going to start him on another probiotic. He has been taking Kirkman Pro-bio gold. Christyw3m1@... wrote: How do you get rid of the gamma strep?-----Original Message-----From: Christel King <christel76together (DOT) net>To: mb12 valtrex Sent: Fri, 6 Jun 2008 1:25 pmSubject: Re: Re: PANDAS the therory I put out there was a few things, I had been noticing a corolation in kids showing gamma strep on stool testing when using probotics with strep lines in it and that kids showing this on stool tests seem to be creating antibodies to strep showing up as PANDAS> what tests did he do to rule out PANDAS? thanks for the feed back I am tring togather as much info as possible, also what type of probotic are you using as well Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS I know there was a thread about this last week or the week before, butI'm still a little confused.'s DAN! tested him for PANDAS...said it wasn't a problem. but theimbalances in his gut listed strep. So did my other son's and so didmine. Christel...I think you thought that they could. what would Ido about it? OLE? How much? my kids are 3.5 and almost 6. about 40and 50 lbs. we're getting ready to start brainchild yeast protocol. with candex,cell food, biocidin, oregon grape extract, garlic. will any of thathelp with strep?Thanks,Kari> > Hi Christy,> > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > probably be your best choice to treat PANDAS. Tonsillectomy is one > treatment option. For some children, the strep lies in their > tonsils. Does your child have enlarged tonsils? That can be an > indication. Other treatment options include low dose maintenance > antibiotics and IVIG.> > > > Pamela> > > > > > > > ----------------------------------------------------------> -------> > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > Date: 6/4/2008 7:10 AM> > > > > > > > > > > > > > > > ----------------------------------------------------------> -----------> > > > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > 6/5/2008 10:07 AM> >> No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM Stay informed, get connected and more with AOL on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Christel, I do not know, but I know that the author of The Makers Diet who recovered from Crohns post an MMR shot does not like that strain and advocates yogurt and probiotics WITHOUT it for the immune compromised...it is in all yogurt though unless homedade and from probiotics you have custom blended. I do not know which probiotics do not have it. Di > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > --------------------------------- > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > > > > > > --------------------------------- > Stay informed, get connected and more with AOL on your phone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 yes we saw probiogold do terrible things for our son, this is what started my theory years ago from his reaction to it, at first we were ok then it was negitive reactions to it, switched to one with out and he thrived. then tried therabotic complete we had the same thing happen as the probiogold, (we were rotating with the detox support at the time) and I noticed all our PANDAS flares happened ONLY when we did the complete and NOT the detox support. I have an aspie friend and we noticed the same pattern in her., so we did ASO and the other test with both and sure enough they rose with the complete and plumeted with the detox support. meaning the body was recognising the strep as the BAD bacteria and producing the antibodies, throat cultures were negitive durring this time and had no indication of strep otherwise other then titers Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS I know there was a thread about this last week or the week before, butI'm still a little confused.'s DAN! tested him for PANDAS...said it wasn't a problem. but theimbalances in his gut listed strep. So did my other son's and so didmine. Christel...I think you thought that they could. what would Ido about it? OLE? How much? my kids are 3.5 and almost 6. about 40and 50 lbs. we're getting ready to start brainchild yeast protocol. with candex,cell food, biocidin, oregon grape extract, garlic. will any of thathelp with strep?Thanks,Kari> > Hi Christy,> > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > probably be your best choice to treat PANDAS. Tonsillectomy is one > treatment option. For some children, the strep lies in their > tonsils. Does your child have enlarged tonsils? That can be an > indication. Other treatment options include low dose maintenance > antibiotics and IVIG.> > > > Pamela> > > > > > > > ----------------------------------------------------------> -------> > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > Date: 6/4/2008 7:10 AM> > > > > > > > > > > > > > > > ----------------------------------------------------------> -----------> > > > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > 6/5/2008 10:07 AM> >> No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM Stay informed, get connected and more with AOL on your phone. No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.1.0/1492 - Release Date: 6/9/2008 10:29 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 we use therabotic detox support probotics, they have a baby powder one as well free of it for those that don't swollow pills that would be great for yogurts Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes Re: PANDAS Christel, I do not know, but I know that the author of The Makers Diet who recovered from Crohns post an MMR shot does not like that strain and advocates yogurt and probiotics WITHOUT it for the immune compromised...it is in all yogurt though unless homedade and from probiotics you have custom blended. I do not know which probiotics do not have it. Di> > > Hi Christy,> > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG.> > > > > > Pamela> > > > > > > > > > > > ----------------------------------------------------------> > -------> > > > > > > > > No virus found in this incoming message.> > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM> > > > > > > > > > > > > > > > > > > > > > > > ----------------------------------------------------------> > -----------> > > > > > > > > > > > No virus found in this incoming message.> > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM> > >> >> > > > > ---------------------------------> > > No virus found in this incoming message.> Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM> > > > > > ---------------------------------> Stay informed, get connected and more with AOL on your phone.> No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.1.0/1492 - Release Date: 6/9/2008 10:29 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 We ran a PANDAS profile from Neuroscience Labs to know for sure. My son has every symptom you read about at nightmare levels. The test was formality for us Kerrie How do you know for certain that your child has PANDAS? There needs to be more than elevated strep antibodiy, correct? Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Kerrie is the PANDAS expert!! She taught me everything I know!! LOL > > > We ran a PANDAS profile from Neuroscience Labs to know for sure. My son has > every symptom you read about at nightmare levels. The test was formality for > us > > Kerrie > > > In a message dated 6/27/2008 10:16:53 P.M. Eastern Daylight Time, > sd042@... writes: > > How do you know for certain that your child has PANDAS? There needs to > be more than elevated strep antibodiy, correct? > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I wish I never heard of the term PANDAS. It's destroying my son and my life Third IVIG was yesterday. Holding my breath.............. Kerrie Kerrie is the PANDAS expert!!She taught me everything I know!! LOL Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 My son has had about 10 IVIG infusion. His ASO were 248 as of the last infusion. They started at 600. We have seen many positive, but it has been best with the combination of b12 injedctions. nne > > > I wish I never heard of the term PANDAS. It's destroying my son and my life > > Third IVIG was yesterday. Holding my breath.............. > > > Kerrie > > > > In a message dated 6/28/2008 12:00:59 A.M. Eastern Daylight Time, > pudgeo9999@... writes: > > Kerrie is the PANDAS expert!! > She taught me everything I know!! LOL > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 sudden onset of OCD< you can see potty training changes and writting changes Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes PANDAS How do you know for certain that your child has PANDAS? There needs to be more than elevated strep antibodiy, correct? No virus found in this incoming message.Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Hello: My 4 yr old ASD son seems to be prone to strep throat especially when around other children. He has been " free and clear " since he's been out of school for the summer, but he just went to a day camp and got a cold and then tested positive for strep. I have been trying to read up on PANDAS and have found conflicting information as to whether or not there is a specific test. I have the impression that is some blood work which can be done, but not specifically PANDAS. We are seeing a naturopath, but can some sort of bloodwork be done with his general pediatrician. In other words, so that our insurance would cover such? Sincerely, Beth S. Acworth,GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 If he has strep now, you can't test for PANDAS. PANDAS is the overproduction of antibodies which attack the body. I would wait a few months to run the titers. Yes, it should be covered by insurance as you can pull ASO titers and AntiDnase titers through a local lab. Cheryl > Hello: > My 4 yr old ASD son seems to be prone to strep throat especially when > around other children. He has been " free and clear " since he's been > out of school for the summer, but he just went to a day camp and got a > cold and then tested positive for strep. I have been trying to > read up > on PANDAS and have found conflicting information as to whether or not > there is a specific test. I have the impression that is some blood > work which can be done, but not specifically PANDAS. We are seeing a > naturopath, but can some sort of bloodwork be done with his general > pediatrician. In other words, so that our insurance would cover such? > > Sincerely, > Beth S. Acworth,GA > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 I am new to understanding PANDAS but I am pretty sure my son has strep for the second time in 3 months. Can someone tell me how to get PANDAS diagnosed? I was told IVIG is covered for this. Mostly, I am just concerned about chronic strep and what it can do (from the PANDAS point of view.) Can anyone direct me to a website or book to read more? Thank you, Johanna Bonnell > > if LDN isn't helping you b cells ect i would go off as it can also swing things worse in some kids. he may need to be off to fight > > Recovering from Autism is a marathon > NOT a sprint, but FULLY possible! > Read more about it on my BLOGs at > http://www.myspace.com/christelking > http://foggyrock.com/MyPage/recoveringwishes > > > Re: Re: PANDAS nne > > > > My son has PANDAS. His myelin basic protein IgG and IgM, his Tubulin IgGand IgM, his Ganglioside GM1 IgM and IgG and his B-Cell Antigen IgG and Igm are all 200-400% elevated. All the penicillin and OLE in the world won't change that. so we went with IVIG > > Kerrie > > > > > > -------------------------------------------------------------------- ---------- > Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.5/1537 - Release Date: 7/6/2008 5:26 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 My sons PANDAS was diagnosed by a test by Neuroimmunolgy labs a PANDAS/OCD panel and also their symptoms...illness triggers behavior changes which occur very rapidly..exposure to strep..You don't always have to have high ASO titers. GO to webpediatrics.com and Dr K has the criteria for PANDAS listed there... > > > > if LDN isn't helping you b cells ect i would go off as it can also > swing things worse in some kids. he may need to be off to fight > > > > Recovering from Autism is a marathon > > NOT a sprint, but FULLY possible! > > Read more about it on my BLOGs at > > http://www.myspace.com/christelking > > http://foggyrock.com/MyPage/recoveringwishes > > > > > > Re: Re: PANDAS nne > > > > > > > > My son has PANDAS. His myelin basic protein IgG and IgM, his > Tubulin IgGand IgM, his Ganglioside GM1 IgM and IgG and his B-Cell > Antigen IgG and Igm are all 200-400% elevated. All the penicillin and > OLE in the world won't change that. so we went with IVIG > > > > Kerrie > > > > > > > > > > > > ------------------------------------------------------------------ -- > ---------- > > Gas prices getting you down? Search AOL Autos for fuel- efficient > used cars. > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.138 / Virus Database: 270.4.5/1537 - Release Date: > 7/6/2008 5:26 AM > > > Quote Link to comment Share on other sites More sharing options...
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