searching_for_help Posted October 27, 2014 Report Share Posted October 27, 2014 Dd is in horrible shape. Took trip to see Dr. L for plasmapheresis. Trip about killed her (and us). Get there and Dr. L says, yes, she has PANDAS and needs PEX asap, and begins setting it up. Dd has physical/mental break and begins stumbling, eyes staring and becoming cross-eyed at times. Weight horribly low and not eating. BMI 13.3. Blood sugar 40. Take her to ER at Georgetown, where we stay for 12 hours with nothing but glucose. Wait for call for pex, only to find out that due to dd's age (she's 22, but had PANDAS misdiagnosed since 9 years old), she can not be seen by the pediatric hematologist that regularly do PEX. Then, to our horror, we find the adult hematologist does not believe there is enough research to justify PEX and PANDAS. Dd is not even given tube feeding while we are there. We pull her out against medical advise, as I know I can get her to eat some at home, but we have a 10 1/2 hour drive to get home. We are left with NOTHING. Even called Swedo's office - they are no help at all. Dd is in horrible condition, but we know that if we put her in the hospital, she will exercise constantly. She can't stop herself. This has happened before, and the hospitals and eating disorder clinics do NOT watch her. If anyone knows of an adult hematologist that is familiar with PANDAS and is willing to do Plasmapheresis, PLEASE let me know. This situation is dire. Also, don't let your kids go untreated, as there is very little help for adults. Dr. K is the only one, but unfortunately, IVIG was not successful for us. Link to comment Share on other sites More sharing options...
PowPow Posted October 28, 2014 Report Share Posted October 28, 2014 Can you go to Aealliance. Org and find some resources there? Maybe your daughter has something identifiable (antibody-wise) & with a better chance of tx, than an adult with the sketchy diagnosis of PANDAS (I am not saying it is sketchy, but that heme doc did) Is dr l any help? Does she know adult heme turned you away? Link to comment Share on other sites More sharing options...
qannie47 Posted October 28, 2014 Report Share Posted October 28, 2014 Try Dr. James Greenblatt. He is a psychiatrist, however, he is also experienced with Pandas and eating disorders. Top Top notch. Top notch and smart. He gets it. He is out of Boston. Call his intake person and they are great. May get you on the phone with him the same day. If you google his name, you will find him easily. Link to comment Share on other sites More sharing options...
pr40 Posted October 28, 2014 Report Share Posted October 28, 2014 there were some posts that people had luck with Duke, when cases were as bad as your daughter's. it would be worth a call. Link to comment Share on other sites More sharing options...
momslove Posted November 8, 2014 Report Share Posted November 8, 2014 Thinking of you. Any updates? Link to comment Share on other sites More sharing options...
PowPow Posted November 8, 2014 Report Share Posted November 8, 2014 searching:here is a resource that may help you: https://aealliance.org/ae-clinicians-network-new-resource/ maybe you can find an practitioner who sees adults or deals with antibody negative AE? Link to comment Share on other sites More sharing options...
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