Medications

 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
Naproxen
Indocine
Methotrexate liquid Injection
Prednisone
Steroid injections into joints
Meloxicam
Arava
Antibiotics
Vitamins
Omega 3
Prilosec
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.

Lyme Disease

Summer time is fun for children but for children with JRA or now called JIA it is a bitter sweet for them. The swimming and running playing with other children is fun for them. How ever in New England here in the United States it is a tricky one. This year was the year for a high tick count. I pulled a few off the dog. Every day I checked Ava thinking I was ahead of the game. We were doing good till August. We were in the garden and I noticed at the nap of her neck there was a perfect little circle the size of a pin head that had blood dripping out of it. I first thought to myself she must have gotten stung by a bee or another bug. I was wrong I was looking for the fat ticks that go on the dog. It was a deer tick, sure enough she started to look run down. Pale, tired and flaring we could not figure it out. Her joints were hot to touch and this time it was bad! I was getting nervous all over again, it was the nerves when you don't know what your child has. Her Rheumatologist at Boston Children's Hospital thought well she is over due for her knee injections. We did blood work to get her prepared and sure enough. The Lyme panel came back positive IGG and IGM. IGG means it is recent with in the last 30 days I kept thinking it was that little bug bite and I was correct. I felt horrible as though I let my daughter down. I was so upset as a parent at myself. I know I can't blame myself but I do, it is what we do as parents. Started antibiotics on 9/5/14 for 28 days threw this she was having low grade temps, headaches, the flare was getting worse and worse and very hot to touch. We were all getting concern but took her off the monib (NSAID) and went on prednisone (STEROID) to help with the swelling. Went back to Boston Children's Hospital and redrew her blood she is still positive IGG and IGM. We are now on our second round of antibiotics and we are close to the end of it she is not even better!. We started tapering down the prednisone and she was up all night now with the other knee swollen. Ava just can not catch a break! The medical team told us once finished if not better she will need a pic line in and have to do iv antibiotics for 28 days till she is better. Now the danger with the LYME in children or adults for that matter untreated it can cause heart block and neuro brain damage. Not only now do we have to watch the arthritis spiral out of control but not be aware of certain things. The doctor told us to watch her memory and if she says she is having a headache. JRA is not easy on this little 6 year old just not at all.

Chicken poxs yes chicken pox 2013

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.