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.

Blister Cold

We live in Massachusetts and lately it has been Blistering COLD!! outside. I am talking about below 0 waking up with the temp being 3 degrees and with a wind chill of 15 makes for -8 degrees!! So imagine being a child who has JRA all I can say is pain, stiffiness. I try to protect as much as any parent, but I do have to work. I keep her heated mattress pad on all night, even thou she wakes in pain and ends up in my bed. I turn the heat up in the house to 74 degrees. I dress her in sweatpants and longsleeve shirts and cozy boots. But most of all a snow suite, yes a snow suite and I know we have no snow right now. It works, she can go outside all bundled up. I bought a winter coat that is warm but made sure it was wind resistance, water as well so if it snows or rains it rolls right off and its not wet. It has fur around her hood so cute. All I can say is its worth the money. Even thou Ava is the only child in the daycare in a snow suite besides the babies I have to remember she is even more fragile.
   Now tring having JRA and sleeping threw the night at 4 years old. In the past 1 1/2years i  have tried every thing in the books and what I have come up with myself. I have learned to give her a nice bath with some bubbles and add little salt rocks to the water lavender. Let her play and soak, next 10 minutes before bed I go and put the heated mattress pad on in her bed. We do our bedtime routine, and I tuck her in with her quilt plus 3 more blankets but when she falls asleep I take them off and leave the quilt. The mattress pad will stay on all night. If I see her sweating I will lower it. In the morning I will turn it up. I have to keep reminding myself even thou we are on a good path right now. I am lucky that the daycare lets her wear her slippers when her feet flare almost every day. Plus her preK, I am thankful for the PT and OT 3times a week. Remember if you live up here in New England we have to protect our Little Ones that have JRA or JA as well. They might look fine, but we still need to bundle them up and preserve them.

Injections

Well I have been able to keep Ava off the biologicals for now. Between having fluid removed and steroids injected into the joints. The anti-inflammatories, methotrexate, anti-acids, vitamins, and zolfran. Also with PT 3x a week and OT 3x times a week have made a huge difference. Finally 2 years later off the anti- inflammatories Ava is just dealing with it now on her own. But the Methotrexate injection is getting to her every week. We deal with the task of her hidding in her closet, in the tub, in our room, under the table. So upset she hyper ventilates. The smell of alcohol wipes makes her start to gag and yes she vomits from the smell. But we get the injection done still at the very high end dose but still not have to get off it just yet.
 Ava is so afraid of Alcohol wipe smells that my father was cleaning the window with windex and the smell made her freak out and start to gag she kept asking if she was getting a needle we said no. It is just cleaner not the wipes. Every day I think what are we going to her but this is our way of life and hers.

Winter

As the winter is here and with any person or parent that has a child with Arthritis knows it straight out STINKS. Lately I have noticed that Ava has had problems again with her pointer fingers, and thumbs and that her hands are swollen. Her little feet are as well, I am lucky that the day care allows her to wear slippers and that I am thankful for her IEP. It was worth the battle with the school system. Even thou Ava is not up to date with her immunizations nor got the flu shot. She has been doing pretty good. Living in New England is never easy on Ava. I have noticed when she is pale like a ghost and run down she has a flare going on some where but sometimes I just can not see it. I can tell because she becomes hot to touch also she sleeps alot more. When put to bed she will ask me to put her heating mattress pad on.
  Ava has grown alot since the start of fall and she has matured alot as well. I was told by her Rheum that children like Ava become more mature faster and are more aware of her body. I have noticed before she would cry or tell me when her body hurts now she just sucks it up and will make herself get out of bed to play or just lay there and try to comfort herself. As a mother when you notice your child is in pain and there is nothing you can your baby it hurts more then anything. Then it hurts that she has had it her whole life and that remission is a long far off distance. We tell Ava that this is her life and we talk to her way she is special but that doesn't mean the world has to stop it means that she will try harder but make an even bigger difference.

November

It has been a few months since the last post. Ava has had so much going on. I finally had enough with the Dr that replaced Dr.Lopez. I hate to say this but a MOTHER knows best when it comes to our children even a Father. I am now happy that I made the tough decision to leave Tufts Floating Hosptial for Children. If it wasn't for Dr.Lopez and his team who knows where Ava would be. It was sad to see him leave, we have since moved on to Children's Hospital Boston and are now being followed by Dr.Sandel I first did my research on him. He is like the god father of JRA, he was so amazing and what an amazing connection he got with Ava. Usually she is not having it and he got to her level and reached out to her. Ava has been on Maloxicam every day for over a year. In sept he said to stop it and to see what her body would do, because it "HIDES" alot of symptoms. So we did a few days later Ava had all her GI problems back again like she was as a baby. On top of that her mouth had these white headed pimples in her mouth. I am not a doctor but I knew she should be Folic Acid with the Methotrexate but she was taken off of it for some reason and now that Ava had to go threw that terrible ordeal with her mouth having booboos. She is now back on the Folic Acid. The Maloxicam did take care of alot of her GI issues but now off she is on liquid Zantac twice a day to help and on stool softeners as well. Miralax every other day to help her out and to give her more control instead of pass large stools. I still don't know some days what to make of it but it is what it is. I believe because Ava went untreated for 2 years and not a doctor knowing what she had made a huge impacted on her life today. I am lucky I am a strong mother but I still can not figure out why me and why my daughter, I know every parent out there who has a chronically ill child says the same thing.