Second set of Jaw Injections...In the near future.

Picture of Savannah before her first set of jaw steroid  injections.

Savannah has arthritis in her jaw...both sides.  This causes her jaw to hurt, and can eventually cause permanent damage if not treated.  She had steroid shots injected into her jaw this past January (2012) in the hopes it would take care of the arthritis.  She had a follow up MRI about three months ago.  It showed some of the arthritis still present.  Savannah's Rheumatologist said to "watch and see" if the pain in her jaw got worse and more frequent...and if it did, Savannah would have to get another set of injections in her jaw.  Well, Savannah HATED her first set of injections worse than anything else she has encountered with her arthritis.  SO, when I told her what Dr. Weiser said, she said she was keeping her pain to herself.  I have seen her grimace more and more frequently the last several weeks. So, she comes to me last night and says, "Mom, we need to have a serious conversation. "  I am thinking, "Huh?!"  She continues,  "It is time for the jaw injections."  The pain must be super bad.  So, here we go again!  To be continued...

New school year...same pain...new attitude.

Sorry I have not posted in a while.  Savannah started the fourth grade one week ago.  Things started out well...great teachers, great school, new beginnings.  Though Savannah has made much improvement from one year ago (she was diagnosed one year ago this month), the old arthritis pain in Savannah’s fingers just refuses to go away.  A writing assignment, she could not finish in class ,came home today for homework...”Mom, I had to take a lot of breaks while writing today.  The pain was bad, but I did the best I could.”  She finished the seven sentence assignment at home, taking many breaks to stretch her fingers, fighting through the pain.  However, one year ago, Savannah could only manage 17 characters...now, she can manage 17 words.  We are thankful for any and all victories.  We are thankful for patient and understanding teachers.  We are thankful for good medicines.  Savannah takes her 55th Methotrexate shot in the morning.  She will take her 15th Orencia I.V. Infusion at Birmingham Children’s Hospital in a couple of weeks.  The pain is still there in most of her body, but more manageable.  Also, we have a new attitude.  We only complain if it is really bad.  If you can’t say something nice, say nothing at all.  We dance in the rain.

More to come...keep praying.  Savannah will keep fighting!

Arthritis has its blessings.

Did I catch you off guard with the title of this entry?!!  Arthritis has its BLESSINGS.  REALLY??!!

I have to tell you that when Savannah got diagnosed with Juvenile Arthritis almost a year ago, I went online to find out as much as I could on this disease.  I especially liked the blogs on people’s personal journeys with juvenile arthritis...they really gave me a lot of insight.  However, I do find it disheartening that so many blogs, about any kind of trials, are filled with such doom and gloom.  Okay, Savannah hurts, every day, and there is no cure for juvenile arthritis (at this time).  Yet, a good friend of mine, who had juvenile arthritis as a child and who now suffers with rheumatoid arthritis and a host of other diseases as an adult, recently reminded me of the positives of Savannah having this disease.

  My friend wrote:

 “Again, I remember the loneliness and sadness of feeling different and not getting to do what other kids my age could do when my illness hit full fledge when I was young. Out of about 40 in the church youth group when I was young, I am only of about 5 that stayed faithful.  One of the reasons I did was because of my illness.  I was so thankful to be alive and I had done so much praying that I held on to God for all I was worth.  Kids that struggle for whatever reason when they are young and have parents that point them to God for encouragement, never forget their walk.”  

I hope these words uplift you as they uplifted me.  God is in control, good or bad, pain or no pain, and we must look for the blessings and help our children see the blessings.

Savannah is presently taking gymnastics four days a week and is doing great with it!  Yes, she still has pain, but she pushes through it and she can do it!  We praise God she is doing as well as she is doing and continue to pray she even gets better.

So, count your blessings...they are out there...sometimes you just have to have a friend to remind you.

Savannah still smiles, despite some potholes!

First off.... YEA!!!!  Savannah got her new Convaid EZ Rider to help her when the arthritis in her feet is too much to bear.  Thank you Convaid for making such an excellent mode of transportation!
Savannah's most recent tests have been mostly positive.  She had an ultrasound to her ankles and feet two weeks ago that showed some minimal arthritis and some bone deterioration to her toes.  The rheumatologist is having us go for another ultrasound in three months to see if the bone erosion is better, the same, or worse.  If it is worse, a CT scan will then be done to determine if her form of arthritis if causing excessive bone deterioration  and medicines will be switched around again.

Savannah had a jaw MRI this past Monday along with her four week Orencia infusion.  The jaw arthritis did not look too bad, so additional steroid shots are not needed at the moment.  If Savannah's jaw pain worsens and becomes more frequent, then we will have to look at a second set os steroid shots to her jaw.  However, all in all, good news.

Her Rheumatologist wants custom orthotics made for her feet in hopes of helping with some of the pain.  The insurance does not want to pay for this unless she has diabetes.  I told the insurance company Savannah could not walk part of the time due to foot pain from juvenile arthritis.  So, now, I am having to get Savannah's doctor to write a letter to the insurance company explaining why she needs the orthotics along with sending her medical history.   My phone calls had phone calls today!  Still, God is good.

Please pray Savannah will see more improvement with her joint pain in the coming months, that her jaw pain does not get any worse, and that her bone erosion improves.  These are what I need for her more than anything.

Savannah is taking gymnastics twice a week...she really loves it...but, it takes all she has to do it.  We are doing this for her physical therapy.  I guess one additional prayer would be that she has the desire and strength to keep up gymnastics.  Her joints need worked and strengthened.

God continues to bless me (mom) every day.  The sun shines, the wind blows, and the birds sing.  

Savannah keeps smiling!

Just a short update. Savannah had an ultra sound done on her feet and ankles last week in Birmingham. The doctor saw some arthritis in her achilles tendon area and some permanent damage/deterioration in her toe bones (damage that was probably there before she started treatment). Savannah still struggles to walk when she first wakes up in the morning, but she manages by rolling around in her desk chair (which she uses until her feet and ankles loosen up from the morning arthritis stiffness). She has another Orencia infusion and a follow up MRI on her jaw in a little over a week. We are thankful for the improvement we have seen on the medicine. We continue to take one day at a time and to enjoy life despite the obstacles. Thank you God for leading the way.

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.

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.