P_Mom Posted June 9, 2010 Report Share Posted June 9, 2010 Not to mention Dr. K did not follow-up on any of the kids in the stories past one year. Although I do know of one boy that was on there that is still doing well (but still on antibiotics, so, is he cured?)...and another girl on there who was doing well for 3 years then had a return of a bad PANDAS episode. It makes me angry, too. Only Dr. K says it is a cure,but, I haven't seen or heard of it yet. Dr. T and Dr. L say it is not, just temporary....I think Dr. B says that also. How long has Dr. K followed these kids. From what one Mom told me who has spoken with him at lenght....not very long. His site makes me want to run out and get IVIG.....but, my gut instinct is just not convinced. I do not want to put my kids through something unnecessarily...you know? But, if I KNEW it was a cure....they would both be hooked up tomorrow. I just don't know and I think Dr. K over-steps things by calling it a "cure." ARGH! Just venting.....so confusing!!!!! Link to comment Share on other sites More sharing options...
melanie Posted June 9, 2010 Report Share Posted June 9, 2010 The funny thing is my son does get IVIG and is a gizillion times better than 8 months ago.He does get IV every 21 days. I read dr ks web page whenever I question my sons dx of pandas------------immune issues.He fits all of his criteria even when he updates the site he adds more about my son.I have never seen him but I would if I had to. I am going to see Dr B ,why I dont know I just feel like I may be missing something and hes 16 so.Anyway I wish I had all of the answers so I can get a full night sleep.. Melanie Link to comment Share on other sites More sharing options...
wornoutmom Posted June 9, 2010 Report Share Posted June 9, 2010 Does anyone know WHY this turning back seems to occur? OBviuously it is not something most getting ivig for pid experience. So why in PANDAS? The high dose? Do we know how the ivig interacts with the brain that would cause this? Or do we just know it happens and its temporary? Link to comment Share on other sites More sharing options...
P_Mom Posted June 9, 2010 Report Share Posted June 9, 2010 yes, I totally agree IVIG help some kids TREMENDOUSLY....but, is it a cure? That is the thing I have trouble with! Yes, we know these kids have immune issues.......PANDAS is an autoimmune disorder.... Perhaps some need monthly IVIG to keep them stable? But, Dr. K states that one high dose IVIG is USUALLY a cure....really? Why haven't I heard of that yet after knowing dozens of kids on this forum who have gotten IVIG? Improvement (sometimes drastically, YES! cure, NO!) Yes, I know some are back to baseline after IVIG....but, they are still on antibiotics! I want to see a child get IVIG, go off antibiotics, and then get strep with NO symptoms! Now, THAT is a cure in my book! Kelly Link to comment Share on other sites More sharing options...
melanie Posted June 9, 2010 Report Share Posted June 9, 2010 I think we need to do an updated survey Ill do it now Link to comment Share on other sites More sharing options...
Johnsmom Posted June 9, 2010 Report Share Posted June 9, 2010 My sons IVIG with Dr K is scheduled for the 17th and 18th. Thanks for adding this positive comment!!!! johnsmom The funny thing is my son does get IVIG and is a gizillion times better than 8 months ago.He does get IV every 21 days. I read dr ks web page whenever I question my sons dx of pandas------------immune issues.He fits all of his criteria even when he updates the site he adds more about my son.I have never seen him but I would if I had to. I am going to see Dr B ,why I dont know I just feel like I may be missing something and hes 16 so.Anyway I wish I had all of the answers so I can get a full night sleep.. Melanie Link to comment Share on other sites More sharing options...
Stephanie2 Posted June 10, 2010 Report Share Posted June 10, 2010 I just don't think that there is a such thing as a cure from PANDAS. I think that you have to come up with an "arsenal" with your doctor and use them as you go along. You catch the flairs and treat them (increase abx, maybe a steroid burst, another IVIG tx) and keep on moving forward - praying you will make it to puberty and beyond Although, for some (Sammy) there appears to be a lasting recovery. Maybe it just depends on the severity of the case... Stephanie yes, I totally agree IVIG help some kids TREMENDOUSLY....but, is it a cure? That is the thing I have trouble with! Yes, we know these kids have immune issues.......PANDAS is an autoimmune disorder.... Perhaps some need monthly IVIG to keep them stable? But, Dr. K states that one high dose IVIG is USUALLY a cure....really? Why haven't I heard of that yet after knowing dozens of kids on this forum who have gotten IVIG? Improvement (sometimes drastically, YES! cure, NO!) Yes, I know some are back to baseline after IVIG....but, they are still on antibiotics! I want to see a child get IVIG, go off antibiotics, and then get strep with NO symptoms! Now, THAT is a cure in my book! Kelly Link to comment Share on other sites More sharing options...
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