The Face of my Tiny Warrior!!!

First Blood Work Back.

Ali's Rheumatologist called me this afternoon with the results of the blood work.
They found her Iron is normal and she was not lacking any other vitamins or minerals. There is also no infection in her blood. They did find that her blood shows a lot of inflammation. She also has what the doctor called ANA that means that the gene or protein I am not sure which it is that causes the eye problems that can cause blindness she does have.
So that means every three months she has to go get her eyes dilated and checked for any sign of troubles. The doctor all said that they would put Ali under general for her MRI and to get the shots in her joints. The doctor said when Ali is under for the MRI she will plan to be there and check Ali's joints to really get a good guide to her range of motion with out Ali fighting.
The thought of Ali being put under does make me worry there are risks involved.
Ali has not been enjoying the taste of the pain meds but I am hoping she will get used to the taste. I called the pharmacy and they said they do not have a ton of choices for that type of med.   

Introduction to a new lifestyle

I am starting this blog for my little girl Ali and her story. 

I have spent a lot of time looking online for information for other parents of kids with JRA but I have not found very much. 

Let me go back and explain what led to my daughter being diagnosed with Juvenile Rheumatoid Arthritis. In mid November of 2011 I was walking into Target with my daughter and I noticed her walking strange. It was like she was walking but her foot was "asleep."  It had been only been a short car ride but I thought it was possible. Days went by but the limp was not leaving. I took her to her pediatrician and he found nothing other then some stiffness in her leg. We put of doing x-rays for a few days in case it was nothing. The limp was not getting better so I called the doctor and asked for the x-rays. Upon getting the x-rays done they found nothing broken. I had her doctor review them again because, Ali was not getting better.

I next booked her with a Chiropractor in case she just twisted her ankle and needed it put back in place. 

He found nothing other then the stiffness and some swelling. She went back for a few more visits with out improvements. 

So back to the pediatrician we went 3 weeks after the limp started. Her doctor went us to a Orthopedic doctor that same day. The Orthopedic reviewed the x-rays saw nothing but, thought it could be a "toddler fracture" in the ankle. Ali was then put in a case from her toes up to her hip on the left leg. 

Dealing with a toddler in a case is not fun but I felt like we had answers. I also was feeling guilty she had been walking on a "broken" ankle for 3 weeks. I felt bad I never saw her fall I worried that maybe in fighting her to get her shoes on I some how broke it. 

3 weeks goes by we get the cast off and poor Ali cried the whole time and would not even let me touch her leg. She was unable to walk or stand at all. Lots of people said "oh thats normal I broke whatever bone and it was weird after." I just gave it time. Two weeks went by and Ali was starting to walk but the same limp was there and now she could not walk when she woke up in the morning. 

She was like a old woman that it would take a couple hours to get going and she would cry and say her legs hurt. I was not sure if she was just saying words with out knowing what she meant until I was combing her hair and she had a knot and told me that hurt.

So I called her Orthopedic and took her back in. At the appointment Ali was in so much pain and crying the whole time and pushing the doctor away he could not exam her. So he asked for us to come back in 2 weeks and give it more time. The next week I was at work and Ali was home with my husband Justin and he called and said that Ali had been up for 4 hours and had not walked and when he tried to get her to walk she would fall over and say she hurt. I called the Orthopedic right away and arranged for someone to come and watch the kids I babysit so Justin and I could take Ali to the doctor. 

At the doctors office Ali was walking some. Ali let them look her her legs and the doctor said "we have reviewed all the x-rays. If there was a fracture it would be healed now this is something else. I believe it is Juvenile Rheumatoid Arthritis. We will refer you to a Rheumatologist." I felt devastated at that moment the second the doctor walked out of the room I started crying. Justin looked at me and said  " I dont know what that means" I told him its bad news. I stopped crying and took them back home and went back to work. We waited and waited for a phone call from the doctor offering a appointment. They called and offered a appointment June 28th! That was about 6 months away! They said if the referring doctor said it was important they could get her in sooner.

So I had to call the Orthopedic doctor and nag them to call the Rheumatology office and tell them to move it up. They finally called again and had a appointment in 2 weeks. 

Ali's appointment day finally arrived it was at Nationwide Children's Hospital. 

We did not have to wait very long for the doctor to arrive in the room. She was very nice came in, and sat down and said she had a few questions for us. She asked Justin and I several questions. Finally she asked for me to take Ali's dress off and shoes. She saw Ali's feet and said I can see it right away in her ankles and 2nd toe on her right foot. The doctor continued to look at all of her joints head to toe. She said "Well it is JRA and it is in alot more joints then just the left ankle. It is in both ankles, a toe, a elbow and most likely her knees too.  She still has good movement in her knees but they have swelling." She explained the next several steps we were going to take for Ali. She ordered blood work for that day. We took her down to the lab for blood work and they took nine vials of blood! The doctor said she will order more blood work next month then every 3 months after.

The doctor also wrote a prescription for neproxin when I went to pick up the prescription the pharmacy said "We do not feel comfortable giving this to you we want to double check I have never seen this high of a dose of this strong of meds for a child who is only 26 pounds." The doctor did call them back and said yes that is correct.  She also said she wants Ali to start going to a Ophthalmologist. Kids with JRA can have swelling behind the eyes and they show no signs until damage has been done. The JRA can cause blindness. We would also have steroid shots after the blood work comes back in all the joints involved. She will also have to start Methotrexlate in a couple weeks. This is a drug they give to kids with JRA and certain cancers. This is a immune suppressant. She said it has been in use for over 40 years and they have had a lot of good results with it.  It will take 6 weeks to see if the meds would work. There are side effects as far as its not safe for her to be around sick people. She said when she comes to the hospital for her appointments she needs to wear a mask.

 She would also order Physical Therapy. She explained that the JRA is damaging her joints everyday it is untreated. Once she is getting treatment then they can work to stop the damage and regain some movement.  

Her physical therapy evaluation is coming up next month. I am hoping Ali is willing to work with them and they are able to make it fun for her.

Justin and I feel a loss right now. We had a "normal healthy" baby for 19 months and it has been taken away the last 3 months. It is not that there is no hope but it will be some years until she it symptom free if ever it is a fifty fifty chance. We love her and think she is perfect in lots of other ways. Even tho she can not do things like run and jump. She is a amazing artist already she loves painting and coloring. She is coloring and painting beyond her years. I have heard that people who are disabled in some areas then excel in others. I think I am seeing that with Ali. She is very sweet and loves to play with her friends, and cousins. She may not be able to keep up when they run but, she is walking behind as fast as she can with a BIG smile on her face! My Ali is a little fighter as has been she was born at 35 weeks due to me having pregnancy induced hypertension. Although she was in the NICU for a week the nurses told me she is strong and a tough little girl. They could see the red head temper in her. She is my tiny JRA warroir!