River Steinberg | CaringBridge

River Steinberg River's Hope

First post: 1/28/2017 Latest post: 1/28/2017
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I am trying to raise awareness about this disorder. Please share with anybody and everybody. I would love it if everybody liked this page and if anybody has any ideas on how to raise awareness, I would love to hear them. Or if I could get celebrities to raise awareness of PIDD or contact me with ideas, that would be so awesome (I am dreaming big). It is my goal to make PIDD's a household name. I don't want other people to go to through the confusion that I went through. And I don't just mean not knowing what IgA Deficiency is but trying to find a good doctor who would actually explain everything in a way that is understandable but also not completely ignore parents worries and concerns. Every immunologist/allergist I brought River to completely ignored the fact that he had this disease and all they cared about were doing allergy testing (which is important, don't get me wrong). I just felt like what I was saying didn't matter or interest them at all. One immunologist/allergist even told me that his immune deficiency didn't need to be monitored. Every doctor we saw all said something different, I was so confused. Then to top it off, River's ENT told me that he could outgrow his deficiency and no immunologist or anything I read online ever mentioned that. All the information I learned about IgA Deficiency I either learned from medical websites or other parents. It should not be that way. The doctor or medical facility that ran the tests should explain the results, not let the parents founder. In River's case, he got diagnosed from MN Gastro in St. Paul, MN and I just got results from their secured online medical records. After over 2 years of searching and being disappointed by doctors I decided River is going to get the best care and I got referrals to see the ENT and Immunologist/infectious Disease Dept at Children's Clinics and Hospitals in Minneapolis, MN. The two providers were so caring and explained everything and they actually communicated with each other between appointments. That really impressed me. 


Doing this makes me really uncomfortable as I am a shy person but if I have to go outside my comfort zone to make life better for my son and other children and parents, I will gladly do that. Nobody should deal with this alone and go through what we went through to actually find doctors who care and who will explain what this diseases or disorders mean and how it can affect the children's lives. 


#immunedeficiencyfoundation
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