Friday, November 14, 2014


 Well since my little girl has been diagnosed it has been a battle. As a parent you feel beat down, with the whole Lyme infection. I feel like I failed my daughter, I am lucky enough to a have a mother to talk to about it. I cried the other night from all the stress of it this ugly illness!! I asked my mom why?? Why??? I am a good person, I work hard she is just a child! But all she could say I am a amazing mother and  I do good by my little girl. I have taken the time to list all the medications she has been on in her little life time at one point or another!

Folic Acid
Liquid Zantec
Methotrexate liquid Injection
Steroid injections into joints
Omega 3
Humira (new)

Ava was so complicated the doctor at tufts had to take bone marrow to make sure she did not have cancer. Ava had lymph nodes  hard and swollen, High fevers, joint inflamed, GI problems, bowels problems, heart racing, and her being ANA positive. She did not have cancer she had RA once the inflammation got under control with a lot of trial and error of which medication would work. Her GI got better and her bowels as well. Ava's heart still races and we have recently did a heart monitor and she has an up coming echo. It is believed when she is in a flare even if we can not see it, it might cause her heart to race. I do know that when she is in a flare her eyes get blood shot, low grade temps and swelling even belly pain. Even thou the doctor tells me that she can not have blood shot eyes when in a flare. He is wrong I have spoken to other parents and their children experience the same thing. Just remember every child is different but one thing is the same, they are our children and are in pain. We are their voices.