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<<Have they tried any meds at all?>>


Janey...no, they haven't discussed meds at all. He's been on Nexium and Zantac since he was 10 because of GERD. His ped rheumatologist doctor is waiting till Feb's blood tests come back before going into treatment options. He is just as confused as I am. He doesn't know of any kids with sS. His knowledge is based on "a few kids with skin issues." I think that is why he recommended the doctor in Pittburgh. Once again....thanks for all the info. This site is such a learning center!!!

Take care, Everyone.


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Dear Margaret,


I am so sorry to hear about your young son. So the doctor told you there is no hope in fixing the swallowing problem? I hope we can all find a medicine that will either stop the process of damage being done or repair the damage done.






Pauline Huggins

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