Cathleen
I really hope you get a dx soon. Maybe wait on holistic until you have a dx.
Your her mama and you sound like an amazing one  it takes a lot of strength to keep fighting when you keep being told things "will either get better or worse"
I had some really good advise that keeps poping in my head for you
Your her mom and you know what's normal for her and what's not. If you have that little voice/gut feeling or things just are not adding up. Listen to it.
I'm am sure it's incredibly hard to make the choice to get more painful test for your baby girl when you DRs are hopeful it will disapear.
Have you contacted a specialist in bone marrow disorders in your area?
You are in my prayers.
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
|