Wednesday, May 16, 2012

Savannah's New EZ Rider!

Savannah is getting a new EZ Rider to aid her when she has "flare ups" with the arthritis in her feet and ankles. Though Savannah is improving, there are still times she cannot walk. It is a Convaid EZ Rider. It looks just like the one in this picture, accept hers will be teal in color. Savannah and I like it because it does not look like a baby's stroller (too young looking), but it doesn't look like a wheelchair (too old looking). It folds to fit in my car trunk and I know it will aid Savannah for many years to come. Yea!! No more of me having to carry Savannah on my back (did you hear that, mom?!). Again I say...God is good, all the time.

Monday, May 14, 2012

Teatment for JRA/JIA -What has worked and what has not worked.

This post is for anyone dealing with juvenile rheumatoid arthritis or anyone just wanting more information on this disease and its treatment. Medicines Savannah has taken or is currently taking: Methylpred (Steroid) -Savannah has been on this medicine, twice, for 10 days. Worst medicine on Earth as far as side effects. She acts crazy, throws tantrums, turns as pale as a ghost, and just feels all around horrible on this steroid. It did very little alleviating her joint pain, too. Methotrexate (chemo drug) -This is taken in shot form weekly. It has helped with Savannah's joint pain some. It is not a "burner" (thank goodness), but can hurt sometimes at injection site. Savannah usually has a bruise, at the injection site, for a few days after the shot. Side effects: headaches, upset stomach occasionally. Remicade (biologic drug) -This is a medicine given by infusion (I.V.) every four weeks. It takes about four hours for the infusion. Savannah saw some improvement on this medicine, but not enough. She had a major flare on this drug after fifth dose, so she was removed from taking Remicade. Side effects: None. Orencia (biologic drug) -This is a medicine given by infusion every four weeks. The infusion only takes about an hour and a half. Savannah has seen her best improvement on this medicine. Side effects: awful congestion about two days after infusion (lasts a few days), headaches. Diclofenac - Used to help with joint pain. It did not help Savannah at all. Naproxen -Used to help with joint pain. It had no effect on Savannah. Celebrex -Widely known medicine to help arthritis pain among adults. It has just recently been approved for children. It did not help Savannah at all, though it greatly helps my adult brother who has adult rheumatoid arthritis. Folic Acid - Taken daily by Savannah to help keep the Methotrexate from hurting Savannah's liver function. Side effects: None. Helps with upset stomach from taking Methotrexate. Juice Plus (vitamin) - Savannah has taken this, daily, for almost five months. She has not gotten sick, once, since taking it...even though she has an extremely compromised immune system due to the medicines she takes. Side effects: None. Strongly recommend. In the past nine months, Savannah has had to go to Children's Hospital/Birmingham FIFTEEN times for appointments, treatments, and procedures. This is an almost two hour trip one way. Is it worth it...YES!!!! It is important to note that everyone is effected differently by medicines/treatments. What works for one, may not work for another and vise versa. We hope this information is beneficial to you.

Thursday, May 10, 2012

Savannah speaking at Arthritis Walk in Montgomery

Savannah spoke at the Arthritis Walk in downtown Montgomery recently. She did a great job! She wrote her own speech and spoke from the heart. She is trying so hard to raise awareness about her condition.
. The children standing next to her all have Juvenile Arthritis, too. In fact 5,000 children in Alabama, alone, have Juvenile Arthritis! Please pray we can find a cure.

Wednesday, May 9, 2012

Savannah is our hero!

Savannah just finished a four week session of gymnastics at our day a week for one hour. She missed one of the four week classes. She was too congested to go...a side effect of her Orencia infusion that particular week. Savannah slept only two hours one night, the congestion was so bad. This, in turn, caused her to miss “Field Day” at school...her favorite day of the school year. Oh, well. At least she did not miss any tests or school work. If one was to look at her, you wouldn’t guess the girl on the balance beam has juvenile arthritis in nearly every joint in her body. You go girl!!! Praise God for such accomplishments! Savannah had a flare up over this past weekend. We are not sure what caused it, but she basically could not walk for 24 hours straight. I carried her on my back when the wheeled desk chair was not available to use. At one point, I carried her on my back to the women’s restroom at church. She had to go to the bathroom and her feet and ankles would not cooperate. What a site! Me carrying Savannah on my church dressed body complete with a big hat! I think my dress was hiked up to where half my slip showed! Oops! We won’t post a picture of that (I don’t have one, anyways...thank goodness!). Savannah has been complaining of her jaw hurting more and more lately. This is not a good sign. An MRI on her jaw is scheduled for next month. A second set of steroid shots to the jaw may be in her future...but, hopefully not. Savannah’s spirits remain high despite everything. One of Savannah’s closest friends wrote her a letter this week, encouraging her to never give up. She also said she would always be by her side through it all. What a blessing friends like that are in so many ways. Our neighbors, a few doors down, sent us a note that she and her two young boys pray for Savannah on a regular basis. It is things like this that keep Savannah motivated to not give up! Thank you, everyone, for all your prayers and encouragement. It makes a big difference.

Thursday, May 3, 2012

Savannah's fight against JRA aired on local news!

A news story aired this week featuring Savannah’s life with Juvenile Arthritis. You can watch it at the following link (you will have to copy and paste it to your search bar...I am not too good on computers):