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Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Monday, May 16, 2011

Jenna's Story

It all started one morning in July of 2008. It was a typical morning for us. Larry was getting ready to head out to work for the day and I was getting the 3 kids and myself ready to head to the beach for the day. As I was busy making lunches, gathering towels, toys and sunscreen, the kids are all running around the house in their bathing suits, Larry asked me, “Why are Jenna’s knees square?”. I thought he was crazy; it was the oddest question I had ever heard. I told him about that much and went on about what I was doing.
While at the beach, my Mother asked me the same question, “Why are Jenna’s knees square?”. It was as though time stood still and I felt like I was being sucked into a vacuum.  I figured there had to be something to it if both of them were seeing something. Some Mother I am huh? I called my little 4 year old Jenna over to me to check out these square knees. Hmm…maybe they are square. I then called over my 10 year old Kailey and my 7 year old Dillon. I wanted to line them all up and compare knees. Son..of…a…gun. Something was clearly wrong, yet nothing was bothering her. We spent the rest of the day at the beach as we normally did since Jenna seemed fine; I figured there was no emergency. The next morning I was able to get her in to see our pediatrician to check out these square knees.  She agreed that they indeed were too big and actually did look squarish. She said something isn’t right but that she didn’t want to jump to conclusions. She got x-rays of both knees that showed excess fluid and swelling. Uh…okay. She told us that the only thing that she is aware of that would cause that is Juvenile Arthritis but she was no expert on it and wanted us to see a rheumatologist ASAP. Uh…ooookay.
The dates get a bit sketchy and fuzzy from here but I believe it was within a couple of weeks to a month at best we were in to see a rheumatologist. He took some x-rays himself, ran some labs and did a physical examination. Keep in mind now, Jenna was ONLY four years old. The lab results confirmed the diagnosis of Juvenile Arthritis; his examination showed that she not only was affected in both knees but also a few fingers, toes, one elbow and one ankle. She was put on Naproxen in an attempt to control the inflammation in her joints. This turned out to not only be a failure but an epic failure. The Naproxen did nothing for her swollen, by now painful joints, but she also had a severe reaction to it. She developed sore, oozing blisters all over her extremities.  Unfortunately it took a few weeks to figure out that it was the Naproxen causing this. Once taken off the Naproxen the sores went away immediately. The Naproxen was then replaced with Motrin, she was scheduled to have the excess fluid drained from both knees, steroids injected into both knees and Methotrexate (chemotherapy med) was added to the mix. All in an attempt to gain some control over this disease. Remember, she is four years old. While the procedure itself was a nightmare, the draining and injecting worked WONDERS in conjuncture with the MTX and Motrin. She showed immediate improvement in all of her joints. And for the most part the swelling in her knees has stayed down. She did continue to have pain and some stiffness and needed 2 tsp of Motrin 4 times daily.
The labs that the rheumatologist ran in the beginning showed that Jenna was ANA+. He explained to us that this put her at a higher risk for developing complications with her eyes. What in the world?? Arthritis affects the eyes? Oh we had no idea the ride that we were in for. At her first eye check we were told she was all clear. Three to four weeks later we went back and she was in a major Uveitis flare up. This is the beast that proved to be our biggest battle. Jenna was put on eye drops to control the inflammation; I believe these were four times daily. At one point she was on three different eye drops but I honestly can’t remember all of them, how often she had them and what they were all for. I do however know that NONE of them are safe to use for an extended period of time. So, we had to find a systemic med that would not only treat the JIA, but also the Uveitis. Clearly Methotrexate was not going to work alone. At this point we added Enbrel to her med list. Enbrel is a once weekly shot, Motrin orally 4x daily and at that time she was taking her weekly MTX orally too. It felt like we were always in a doctor’s office or on the road. We had to take her to her rheumatologist , about an hour away every 6-8 weeks and she needed to see the Uveitis specialist, about 3+ hours away every 4 weeks! It was getting to be too much and nothing was getting better, rather it was getting worse. Over the winter months Jenna would wake up crying and refusing to get out of bed because simply getting up hurt her too much. We lived in Maine at this time and the winters can be brutal. If we had to go outside for anything I would have to carry her because her legs would freeze up. We felt as though we were banging our heads against a wall and for nothing!
We asked her rheumatologist if her felt that maybe a warmer climate would help her. He said that not only would it likely help her, but if we were interested in NC, he could get her into the Duke Children’s Hospital Pediatric Rheumatology clinic. The bonus is that the also have a pediatric eye clinic to see her and treat her Uveitis. One stop shopping. We researched them and saw that this is what we had to do for Jenna. We packed up and headed south, leaving behind all of our family and friends in June of 2009.
At her very first appointment the pediatric rheumatologist at Duke told me that her meds were ALL wrong and that she was so happy that we were here. Administering the liquid injectable MTX orally is not advised and Jenna is a clear reason of why, it doesn’t work. The Enbrel is not proven effective when treating Uveitis. Yeah, we figured as much since she had been on it about 8-10 months at this point with no sign of improvement. She also was not taking any folate or prevacid to counteract any side effects that she may have from the MTX.
Initially we tried just changing the MTX to injectable form to see if that would make any difference before we tried changing her from Enbrel to anything else. I wanted to take things slow. At her next visit however, there was no change in her eyes. Her joints were okay for the most part by this time with only minor swelling and pain.  Her MTX was increased from 0.4 ml to 0.8 ml and we made the switch from Enbrel to Humira. Her body did not tolerate the increase in the MTX. She had severe abdominal pain and her hair was falling out in clumps. I called the ped rheum and she backed her down to 0.6 ml, increased her folate and added prevacid to Jenna’s daily meds.  So by this time we are in about December of 2009, Jenna is not quite 6 years old yet, and she is taking 1 weekly injection, 1 bi-weekly (very painful!!) injection, and 2 sometimes 3 daily meds.
The good news is that the Humira worked!!! It cleared her eyes of the Uveitis, she was able to get off of those God awful drops that she had been on since fall of ’08 and she was showing more signs of improvement in her joints. She did have a rough time with infections in her ears, lungs, sinuses, etc. over the course of that winter. I think her body was working too hard at keeping up with the meds.
Her summer of 2010 was fantastic!!! She looked and felt better than she had in 2 years. It was so great to see and it almost felt as though we had a caught a break. Then fall of 2010 hit. I don’t know if it was just the shift in climate, but she started going downhill again. More pain, more fatigue, more frustration from this never ending ride.
Jenna’s meds remain the same at this time. Until she can be symptom free for one year, we cannot try taking her off of them. We are heading into summer again so I have high hopes of another great one! Jenna sees a pediatric PT once a week to help her regain some muscle mass that she has lost due to the JIA. She was fitted today with custom orthotics to correct some issues with her feet and ankles. I believe that after three very long years, we may finally be on the right path. I pray to God every day that we are.


Tammy Faulx said...

Amy, I am so sorry for all that you and your family have had to go through. I can't even imagine watching your child go through this pain and all of the side effects. May God give Jenna peace and relief from pain, and I am praying that you will have the strength to continue to be there for her. Love to you all.

Abby Talley said...

Thank you for coming to church last Sunday. Our class was so moved by your visit and Kailey's important reminder to just get over yourself! There weren't too many dry eyes in the room. We'll pray for strength, peace and wisdom as you continue on your journey. Our God is an awesome God.

David said...

It's eerie for me to read this blog entry about Jenna. Our 2 1/2 yr-old daughter Holly has just been diagnosed with JIA... ANA+ She has been put on the weekly Methotrexate injections and twice daily Naproxen too. Holly differs from Jenna in that so far, she has suffered no side-effects to the Naproxen. Dunno about the Methotrexate. Will be reviewing your blog to help understand what we face. Thank you for doing this.