Tuesday April 28th 2015 Appointment

On Monday SP finished up the oral steroids.
Two months on steroids brought about:
*10 lbs of weight gain
*Cheeks to rival a chipmunk
*Emotional outbursts, crying, screaming, self harming (hitting)
*increased body hair


those are all the negatives

The positive- the inflammation is gone! the disease is quiet!

very, very thankful for that! This makes 2 good appointments in a row.

We are hoping once the steroids are completely gone, our sweet little girl will come back, leaving the highly emotionally charged roid rage one far, far behind.
And hopefully those poor cheeks go down too ;)

November 2014: Band Keratopathy Surgery

November 2014
The morning of surgery, Daddy wasn't feeling very well, so we left him and brother at home. SP and I made the trek up to DuPont in mostly good spirits. The knee procedure had gone well, so SP had no fears of another surgery- looking back I am so thankful for that!

I somehow missed a turn and with the soggy weather we were really running behind, we got up to the right area and her name was immediately called. Inside I was a mess. Handing your baby over for surgery is a feeling unlike any other. Your most precious gift is taken back behind those swinging doors, away from you, you know she is in skilled hands, but everything is outside of your control.

SP was such a trooper, so very brave going in. Sadly coming out of anesthesia was a nightmare. She screamed, kicked, cried and tried to rip the patch covering her eye. It took two nurses and myself to hold her down and stop her. I got into the bed and held my poor brave girl and thankfully she fell asleep. When she awoke she was much calmer but still in pain.

The band keratopathy removal went really well in that almost all of it came off, sadly the cataract is very bad and the Dr feels she will need her lens replaced. With her JIA if she has another flare-up in her eye it could cause the lens to be moved requiring more surgery, we can only hope that doesn't happen.

At home SP was very unhappy, she would get random bursts of pain that would cause her to scream. In the days following we gave her drops and I was unhappy to see how crossed her eye suddenly looked, I hoped that was just a temporary side effect of the surgery.

At the follow-up appt 5 days later, the Dr was surprised SP was not in constant pain because the eye is still deeply scratched. We kept her out of school for the rest of the week. She was still having random times of pain that causes her to scream so I couldn't have imagined sending her to school like that!






The cataract surgery was scheduled for in January and thankfully we were told that it is not as painful as the band keratopathy surgery that she just had. Thank goodness for small blessings! Though at that point I wondered if we would have to drag SP kicking and screaming into the hospital for another surgery after the rough experience of the band surgery :(

April 8, 2015: Good Appointment

Today was a good appointment, the disease is quiet- those words are music to our ears :D We can begin to wean SP off of oral steroids, HALLELUJAH! Oral steroids while awesome at what they do have some very not so nice side effects :(
*weight gain - SP put on 7-8 lbs in the 4 weeks she has been on them

*moon face- big cheeks? oh yes!
*mood swings - yikes! it's like a 20 teenagers inside her little body, emotional overload!
*irritability - sadly yes! she has even begun to hit herself when she simply cannot process what is going on :(

1st picture shortly after cataract surgery, before steroids

2nd picture is current while on steroids, her poor cheeks







We also learned that sadly there are more eye surgeries in SP's future, eye muscle and another band keratopathy removal, the good news is that both can be done at the same time. While I'm not at all happy my sweet girl needs these done, I remain hopeful that we are moving in the right direction and doing what is best for SP.

Ophthalmologists and Appointments

Once the original eye inflammation got under control and we only had one joint flare-up, life continued and honestly we pushed the idea of JRA into the backs of our head. We couldn't let the fear of it take over our lives, and for now things didn't seem so bad.

SP did things all normal kids do, just a few exceptions, no burpees (yeah who would have thought a little kid would be doing those...a hardcore crossfit gym teacher that's who!), going easy on any activity that might compress the joints a bit too much. But sports were encouraged, so soccer and swim continued. We lost our amazing Ophthalmologist Dr Milner in July 2014 to retirement, a well deserved one, but we would miss him and his upbeat attitude. Thankfully he referred us to the team up at AI DuPont Children's Hospital, and since our Rheumatologist was up there, it made sense. Funny enough months later it came up in conversation how they, Dr Rose and Dr Salvin had breakfast together at times, teamwork! and communication between doctors is a must. :D Before he retired, Dr Milner cautioned us that a surgery to remove the band keratopathy would need to be soon and she would not be a happy camper after the surgery. I couldn't make the first appointment with the new Ophthamologist Dr Salvin, so I had to hear the news over the phone from my husband. Not only was the band keratopathy bad but she also had a cataract. I was in the middle of a store with our 3 yr old son and wanted to curl into a ball on the floor and sob. My baby had a cataract! Cataracts are for old people not small children!!! The bubble of calm and peace we had been living in for months popped.

1st Joint Flare-up

In June of 2014 SP woke up and complained of her knee hurting, being in a rush I dismissed it as growing pains or her having slept wrong. I didn't even look at it until several minutes later. And when I did what a shock I received.

That picture is actually from when it began to look better :( To the ER we went, several hours later and after two phone calls to Dupont Children's Hospital, the ER Dr felt positive it was a JRA flare-up. We started giving naproxen sodium at home and icing it down. SP went to school to enjoy the last few days of Kindergarten, she doesn't let anything slow her down. She participated in field day and a dance recital!

We went to Dupont and got seen by the wonderful Dr Rose and decided the joint needed a corticosteroid injection and to have the fluid drawn out. Since SP is a child and little kids don't do too well holding still while people are poking them with long needles she would have to be put under anesthesia. As a parent I wasn't too happy about that, but we do whatever it takes to keep our girl feeling good. A week before the procedure I received a phone call asking if we would be willing to have SP be a part of a research study. Absolutely! Basically anytime they remove tissue or fluid from her they will assign it a number and use it as part of their research. I doubt the findings will ever help SP, but if it can help another child I'm all for it.

The day of the procedure went very well, SP was calm and relaxed going into the procedure and the same when she awoke. I'm overjoyed to report that has been the only knee steroid shot she has needed thus far. So currently only her left knee and right eye has been affected by the JRA, that is beyond amazing. If the JRA affects 4 joints or less there is a greater likelyhood that it will go into remission when she is a teen. As a parent we hope and pray that is the case!