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@slkanowitz

Just a few comments to hopefully help you and your daughter. A hematologist is a must IMO as is a peripheral smear which can be ordered by any of her docs. Autoimmune disorders are often paradoxically combined with immune deficiency that she apparently has, making her prone to infections. She would also benefit from a serum protein electrophoresis blood test which any doctor can order. This detects abnormal proteins from bone marrow that may be related. The Avise CTD, connective tissue disease, blood test ordered by rheumatologist is more sensitive than the standard autoimmune antibody tests like ANA and RA, and tests for many AI disorders, so helpful in determining which if any are brewing. Your “gut” is an extremely important part of your tool box as a parent and any good doctor will respect your “gut” and act on it. I usually preface my suggestions for additional testing by saying something like “sSo what would you think of adding/checking …?” to preserve egos. Or “I have heard …might be helpful , is that a test we could do?” You plant the seed, they decide whether to do it. With kids every blood draw is traumatic so combining and anticipating next steps (sometimes an extra tube drawn for add ons) helps. Most labs keep serum 7 days for add ons, a crucial window of time.
You are being incredibly sensitive and responsible, taking care to research and advocate for her. I hope you get answers soon, effective treatments and she gets better quickly! Hugs!!

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Replies to "Just a few comments to hopefully help you and your daughter. A hematologist is a must..."

Thank you! This is very helpful and I will look into all these tests very soon. I'm about to pick up my daughter from camp and drive to Philly for an overnight stay - we have an appointment early tomorrow and what is a 40 minute drive in good traffic can be a 3+ hour drive during rush hour so we don't chance it.

Again, thank you so much for the insights and ideas.