Friday, November 14, 2014
Methotrexate liquid Injection
Steroid injections into joints
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.
Thursday, October 30, 2014
2013 was a rough year! For many of you who have a child who is 5 going into Kindergarten please be prepared. I thought we would be good I had her 504 Plan in set and updated. For Ava to get her PT and OT and the nursing staff was on board knowing all her medications. But we were wrong since Ava not got her immunization shots after the age of 3 she caught a lot of colds and had a lot of flares. One virus she got the night of Halloween and said she was tired and did not feel good. Was yes the chicken pox! Since she only got the 1 vaccine and never got the 2nd vaccine it came out like a rash and fever. On the nap of her neck and trunk of her body. When I brought her to the doctors office they thought it was just a heat rash. I then brought her to Boston Children's Hospital because she was scratching it and crying it hurts. Once in the hospital found it is the chicken pox. It comes out like shingles now since my daughter has only had one vaccine against it. Chicken pox does not look like what I grew up with at all. The small blisters with puss and you are told to go play with your cousins or neighbors so they could get it. Not any more and now young doctors and fellows do not know what they are looking at. We needed the old school doctors to come in and it is sad. I do understand the reasoning behind the vaccine to say 100 to 1,000 lives a year in the United States but how is it saving life's if other children who are auto-immune are now catching it and the doctors don't know what they are looking at? It is not fair in my opinion as a mother and for the medical staff. It takes months to get out of her system. Yes she had flares during it as well. The spring came and the summer and she was a trooper pushing threw everything.