qannie47 Posted October 4, 2013 Report Share Posted October 4, 2013 OK guys, My ds has been in a Horrible episode for about 2 weeks now. This was not to be since he had the IVIG. The abx is not working either....His pediatrician, agrees that Mayo might be a good idea. If you all had your druthers, where would you take him for a collaborative approach. I want ALL the tests runs, MRI, etc.....He is becoming non functioning even at school, something new.....UGH. Worried. Link to comment Share on other sites More sharing options...
JoyBop Posted October 4, 2013 Report Share Posted October 4, 2013 So sorry!!! Tell me what they offer at the MAyo Clinic? Would it be just a psych eval? Or do they do something with PANDAS? Link to comment Share on other sites More sharing options...
PowPow Posted October 4, 2013 Report Share Posted October 4, 2013 Where do you live? Can your ped do sed rate, ana , etc? Do you think this is autoimmune? Can you go see Dr L or get pex? That was the best for acute severe episode for us. High dose steroids? Link to comment Share on other sites More sharing options...
qannie47 Posted October 5, 2013 Author Report Share Posted October 5, 2013 I am sending our records to Mayo since Pandas diagnosis. I assume, since they are a collaborative diagnostic clinic, they will approach this form all perspectives....at least that is what I hoping for. They said they will review our records and get back to me. I have been told that they are not Pandas friendly, but I have shared with them that I am looking to rule out other disorders, I am not looking for a definitive Pandas diagnosis. Link to comment Share on other sites More sharing options...
qannie47 Posted October 5, 2013 Author Report Share Posted October 5, 2013 I need to clarify, it was not Mayo that said they were not Panda's friendly, that came from a personal resource....we shall see. Link to comment Share on other sites More sharing options...
JoyBop Posted October 5, 2013 Report Share Posted October 5, 2013 I hope it works out well. Will your insurance cover it? I think its side to rule other things out. But pandas can look like so many other things. I wonder what an MRI would show. It sounds like its definitely worth a try. Link to comment Share on other sites More sharing options...
PowPow Posted October 5, 2013 Report Share Posted October 5, 2013 My daughter was treated for "pandas" for years, only to recently be diagnosed with autoimmune encephalitis, with identifiable antibodies. I think a thorough workup is necessary. I will pm you more. Link to comment Share on other sites More sharing options...
JoyBop Posted October 5, 2013 Report Share Posted October 5, 2013 PowWow does the autoimmune encephalitis cause the same symptoms? What were the antibodies to? Just curious, what kinds of tests revealed that info and was it resolved? Link to comment Share on other sites More sharing options...
PowPow Posted October 5, 2013 Report Share Posted October 5, 2013 Slightly increased sed rate and positive ANA, led to testing and finding positive RNP and anti-cardiolipin antibodies. Autoimmune Encephalitis ABSOLUTELY looks like severe PANDAS. OCD, delusions, movements, you name it. My daughter is getting treatment to suppress her immume system and is doing much better. Joybop, with that hashimoto's you must make sure your kids are getting checked thoroughly! Also having multiple kids affected. I have/had two severe kids and two not so severe ones. All are getting checked! We do have a strong history of autoimmune diseases on my (maternal) side. Link to comment Share on other sites More sharing options...
philamom Posted October 5, 2013 Report Share Posted October 5, 2013 Slightly increased sed rate and positive ANA, led to testing and finding positive RNP and anti-cardiolipin antibodies. Autoimmune Encephalitis ABSOLUTELY looks like severe PANDAS. OCD, delusions, movements, you name it. My daughter is getting treatment to suppress her immume system and is doing much better. Joybop, with that hashimoto's you must make sure your kids are getting checked thoroughly! Also having multiple kids affected. I have/had two severe kids and two not so severe ones. All are getting checked! We do have a strong history of autoimmune diseases on my (maternal) side. PowPow- curious what treatment you are doing? My dd's ANA has been positive for 2 years now. Her Sed Rate ranged from 96 to 55 between Nov 2011- June 2012. Normal in a child is below 10 or 14, I believe. Her sed rate is normal now, but goes up when d-nase increases -assuming due to inflammation. Dd is dealing with lyme, bart, strep. C-reactive is another blood test you may want to run along with sed rate. Link to comment Share on other sites More sharing options...
PowPow Posted October 5, 2013 Report Share Posted October 5, 2013 (edited) Cellcept (oral) Monthyl ivig 1g/kg 1g solumedrol monthly 6 months total for infusions. Philamom, We have talked before, about lyme stuff a few years back. Has the ANA ben thoroughly checked out? dsDNA, ENA, ace, has it all been checked? Antiphospholipid antibodies? My daughter had lyme and babesia but treating it was the not ticket to recovery for her. This seems to be! Not sure if the lyme was a contributing factor or just coincidental, but unfortunately there is another disorder at play . so glad they found it though! Edited October 5, 2013 by PowPow Link to comment Share on other sites More sharing options...
philamom Posted October 5, 2013 Report Share Posted October 5, 2013 Yea, she had a good work-up. What is ENA? Glad you figured it out! Link to comment Share on other sites More sharing options...
3bmom Posted October 5, 2013 Report Share Posted October 5, 2013 I am confused. Our Dr says PANDAS is autoimmune encephalitis. There also is a great discussion about this on Radio PANDAS WITH DR T, the author of Brain on Fire, and the Stanford PANDAS clinic. I also just read an article in the NIH from 09 how mycoplasma has been causing encephalitis in children since the 40's and most of those hospitalized children were asymtomatic which was the case with us along with viral and strep. I got a positive culture with Lyme just recently with the new test but previously always tested negative so that may be an issue too. The article also mentioned a mycoplasma Penetrans in urine. Said it was of uncertain pathological significance in immunodeficient virus infected people. I have never gotten an answer to why so many kids have urinary issues and I know of moms who even did the penile scope. Could this be a piece of the puzzle? 3bmom Link to comment Share on other sites More sharing options...
otksmama Posted October 6, 2013 Report Share Posted October 6, 2013 Qannie what does dr k say about all of this? I don't understand the differences either...pandas IS an autoimmune disorder, causing brain inflammation. Can someone clarify the above discussion that seems to imply pandas is not autoimmune or inflammatory? Link to comment Share on other sites More sharing options...
qannie47 Posted October 6, 2013 Author Report Share Posted October 6, 2013 We will see Dr, K on Monday. His ped doc is also going to run some inflammation tests....I don't know the difference between the two either....perhaps someone can clarify this for us. AE sounds scary....that is for sure. Link to comment Share on other sites More sharing options...
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