pandakid11 Posted October 4, 2012 Report Share Posted October 4, 2012 Our son is now having conversion symptoms like not being able to walk. Also, he is in tons of pain. Is this a normal PANDAS reaction? What do you do? So heartbreaking. Thanks Link to comment Share on other sites More sharing options...
kos_mom Posted October 4, 2012 Report Share Posted October 4, 2012 Please consider that this is NOT conversion disorder. This is what doctors tried to tell me about my own DD until her leg spasticity reached a point where she became hyper-reflexive. After nearly a year of dismissiveness, we finally stopped hearing about somataform disorder when that point was reached. DD, 19, is now on baclofen , a drug coonly used for MS patients with spasticity, that allows her some ability to walk. She also takes tramadol for pain--helps somewhat. Her neurologist, Dr. L, is testing for many things for DD's leg problems, but her leading theory is that it is Pandas related--leg and knee pain commonly occur with the related disorders of RF and Sydenhams and, while perhaps not typical of Pandas, they can accompany it in rare instances. DD is on abx, but we are moving as fast as we can through the insurance quagmire to get her IVIG, which Dr. L thinks she needs as soon as possible. Link to comment Share on other sites More sharing options...
mama2alex Posted October 4, 2012 Report Share Posted October 4, 2012 Has he been evaluated for Lyme Disease and other tick-borne infections? Lots of kids with PANDAS also have Lyme and I've seen a number of people in wheelchairs in our LLMD's office - its not uncommon. Pain is also a very common Lyme symptom - can be joints, muscles and is sometimes migrating (it moves around the body). The Lyme forum on Latitiudes is full of knowledgeable parents whose kids have PANDAS/Lyme - you can learn more about who to see and what tests makes sense over there. Like PANDAS, Lyme is very complex and in the end is a clinical diagnosis. Personally, I think "conversion disorder" is a made-up disorder used by doctors who don't want to believe that symptoms like this have an actual physical/infectious cause. But that just my humble opinion. Link to comment Share on other sites More sharing options...
hugs2day Posted October 4, 2012 Report Share Posted October 4, 2012 Is your son on Azithromycin? His symptoms sound like severe PANS. Yes, it does have pain, joint pain. Nothing is normal about PANDAS/PANs or lyme. Regardless of the diagnosis a lot of the symptoms cross over and every kid is different. Azithromycin put my son in remission initially and he also had severe joint pain and a strange arm and leg movements. It works fast if its going to work. Our son is now having conversion symptoms like not being able to walk. Also, he is in tons of pain. Is this a normal PANDAS reaction? What do you do? So heartbreaking. Thanks Link to comment Share on other sites More sharing options...
sosudden Posted October 5, 2012 Report Share Posted October 5, 2012 Could he be feeling anything that is making him "afraid" to walk? Anything besides the pain? I know my DD10 (who also has POTS/dysautonmia)can have a racing heart, burning leg pain, and feel "off-balance" and "heavy" which makes her not want to move about much sometimes... I also would look much more in to it before you think conversion disorder. PANDAS/PANS is so crazy weird and presents differently. Link to comment Share on other sites More sharing options...
pandakid11 Posted October 5, 2012 Author Report Share Posted October 5, 2012 This POTS sounds like him. What do you do for it? Thanks Could he be feeling anything that is making him "afraid" to walk? Anything besides the pain? I know my DD10 (who also has POTS/dysautonmia)can have a racing heart, burning leg pain, and feel "off-balance" and "heavy" which makes her not want to move about much sometimes... I also would look much more in to it before you think conversion disorder. PANDAS/PANS is so crazy weird and presents differently. Link to comment Share on other sites More sharing options...
sosudden Posted October 7, 2012 Report Share Posted October 7, 2012 She saw cardiologist to rule out any heart abnormalities. We increased her salt and fluid intake as the theory is this i creases the plasma volume which helps increase blood pressure and lower heart rate. For our dd10, this was not enough so we started her on Florinef. She is one month in to this medication and doing better. She continues to have the postural tachycardia BUT it rarely geta to the 180'smedical as it used to. If you know how to check a pulse you could check his for 1 full minute laying then sitting then standing...pm if you want to talk. Hang in there! Link to comment Share on other sites More sharing options...
tpotter Posted October 7, 2012 Report Share Posted October 7, 2012 She saw cardiologist to rule out any heart abnormalities. We increased her salt and fluid intake as the theory is this i creases the plasma volume which helps increase blood pressure and lower heart rate. For our dd10, this was not enough so we started her on Florinef. She is one month in to this medication and doing better. She continues to have the postural tachycardia BUT it rarely geta to the 180'smedical as it used to. If you know how to check a pulse you could check his for 1 full minute laying then sitting then standing...pm if you want to talk. Hang in there! Postural tachycardia, joint and muscle pain, difficulty walking...all can be symptoms of lyme disease and other co-infections. My DS had them all. He also has PANDAS/PANS, although personally I think that lyme and co-infections are all part of the entire PANS dx. Link to comment Share on other sites More sharing options...
kos_mom Posted October 7, 2012 Report Share Posted October 7, 2012 There is a very samll device for measuring heart rate and blood oxygen that is sold to help asthmatics. A friend gave my daughter one following three attacks in July that I failed to recognize as asthmatic (this can be very hard to recognize without certain devices). I think you can buy at Walmart or similar--may be $40 or so. A bit pricey, but I wouldn't trust myself trying to do a pulse. Link to comment Share on other sites More sharing options...
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