There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Tuesday, May 17, 2011

UPDATE: Cells are Back in the Right Eye !!!!!!!

Not a good day! Had to skip the Remicade Infusion last Wed due to a light cough & red throat (although Bailey didnt complain at all or seem sick),... SO due to go today but had eyes checked yesterday first...... Good thing we did. Cells in the right eye are Plus2/Plus3 (Ratings for amount of cells....). SO,.... Back on the PredForte Steroid Eye Drops EVERY HOUR (16 a day) and the Dilating Drops 4 times a day as well. Cough has gotten a little worse this week, but not bad like when she has had a cold or sinus infection, etc,.... Strange! BUT, cant take a chance with the Remicade suppressing her immune system more now,... so Waiting to hear from the Dr in Tuscaloosa to tell us to come down or wait another week...... In the Past EYES were flarring after Remicades were stretched out to 8 weeks,.... this time its only been 5 weeks. Been sick on my stomach since yesterday,.... is this where it gets tougher for her...... I HOPE NOT!!!!!! We have felt blessed because we hear of so many Horry stories of Kids all around the states that seem worse & have phnuemonia several times,... surgeries,.... But Now am wondering - Is this Our time???? Praying that its Not!!!!!!

1 comment:

Monica said...

Have you looked into alternative treatments? This is a great article: