Wednesday, March 9, 2011

Breanna's Juvenile Arthritis Battle Update

It has been a long time since I have posted anything. My college has taken up much of my time. I am set to graduate this May and hopefully join the workforce again this time as a Physical Therapy Assistant. Breanna has had her ups and downs this year. She is in Kindergarten now. We have not had many problems with her joints. We have been told she is in a medicated remission. I am still not a big fan of Methotrexate. I know it is what has made the arthritis stay away, but giving your child a shot every week stinks. We have still been fighting the side effects of medications. We are in the process of weaning her off all her arthritis medications. Meloxicam has been gone for a month now and so far, no changes in her joints or her stomach problems. We go to see the rheumatologist in 3 months if all goes well they will reduce the dose of methotrexate. Breanna really wants to just stop it all. She has had to be accommodated due to all the illnesses she picks up at school. She is a smart kid and knows that it is the methotrexate that causes her to get sick easy. She doesn't like to seem different and not keep her supplies with the other kids. She hates the smell of sanitizer "it smells like shot" she says referring to the alcohol smell. She has also realized that the methotrexate gives her the stomach aches. She told me, "But mom I just started feeling better a couple days ago and now it's shot night. It will make me feel icky again." I don't know what to do or say really. I try to tell her about what good the methotrexate has done. But she was only 14 months old when it began she doesn't remember the bad times of arthritis all she remembers is the shots. I am really hoping that she is in a state of remission that will remain even after all meds are gone. My baby needs a chance at childhood without all these doctor appointments, labs, shots, medication, too sick to play or go to school for weeks at a time. Please pray that this will last long enough to give her a glimpse of a care free childhood. While we wait for the cure we would love a non-medicated remission. As long as there isn’t a cure it is somewhat like this gloomy cloud lurking over our head making us fear if it will strike again. I pray for everyone that battles arthritis pain free days.

3 comments:

Omayra said...

My son was diagnosed with this disease four months ago, he is two and a half. He got a steroid shot to his knee just yesterday, I am hoping it works!!

Anonymous said...

Hi. I am also a "do it all"Mom but my case a bit different as I'm the one with JRA. I have had it since age 3 now 38. When I was first diagnosed they only had Motrin or Advil. My mother said I took 26 pills a day. Shortly after was also diagnosed with Iritis and now suffering from Glaucoma. I just underwent 3 surgerys since January to save my vision. I am a Physical Therapist Assistant for the past 16 years and just completed my BS in Health Education and Promotion this past May. I love being a PTA, however it does play tol on my body and now with my vision in jeopardy I fear falling into the typical go on disability scenario. I went back to college juggling work, 2 young children and the effects of this disability with the goal of using my condition as a positive one, hopefully in advocacy. I tell you this as I read your blog and feel your pain as my mother must of felt but know that there is much more attention to JRA today but NOT enough! As you probably already know 1 in 250 children have JRA in the US. I'm so very interested in advocating but my condition at this time is limiting, just as im typing this my eyes are tearing and getting yet another headache. I'm on medical leave from work due to my last eye surgery but I will not give up. I have fought since a child and determined to make a difference for the good not surcome to the disability.
With this being said. I have also learned when I need to rest and now i do so in short, if you are engaged in any awareness or advocacy efforts let me know and maybe we can join hands as "do it all moms" from a Mom with a child with JRA and a Mom that has JRA since childhood.

Sincerely,
Corie
ctrezon@yahoo.com

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