Monday, July 2, 2012

How it began...

Please take 5-10 minutes to read about this disease by clicking on either of the above links or reading the summary below the posts at the bottom of this page.
This blog is to keep our friends and family updated as well as
share information with other families going through this.

Lucianna, (lu-see-aah-nah), 3 years old, is our youngest of two daughters, our oldest daughter is Isabella ("Bella"), who is nearly 5 years old. I chose the background for this blog because Lucianna will do anything for a jelly bean!

(Some prior history on her for other parents reading who may be able to find some commonalities:)  As an infant Lucianna had food allergies to breast milk despite my efforts to eliminate offending foods. No elimination diet would work and I had to give up breast feeding at about 10 months. Lucianna was put on a special hypo-allergenic formula, (Elecare), for infants with food allergies and it worked great. She was eating normally by 14 months old, drinking cow's milk and eating the recommended table and jarred food. We slowly learned that she had a speech delay as a toddler but it was remedied with a great speech therapist between ages 18 months and 2 years. (As with anything, we were very swift in our action to get her help.) At 2 years old, her speech was considered advanced for her age. We were thrilled!

That leads us to current: Up until June 7, 2012, she was a very active child with no prior health concerns. On Memorial Day Saturday, May 26th, she had a fever of 102.3 with no other major symptoms. Worried that perhaps she had an ear infection or strep, and that we were headed into a holiday weekend, I chose to take her to urgent care. 

After a spot test confirmed Mono, (or some other virus in that family) we were sent home with a pamphlet on guarding against any rough-housing to protect her spleen and told to have her drink plenty of fluids for the next 4 weeks. I really thought nothing of the Mono because she had very minor symptoms; in fact, the only symptom she had was a fever that barely lasted 10 hours.

The following week was our oldest daughters' ballet recital. One week after a positive Mono test, we noticed Lucianna was requesting that we carry her and would say, "my legs hurt". She began to walk with a slight limp and did not want to put weight on one leg. She had one knee that appeared swollen. Her grandparents were in town for the recital also felt that the leg limping seemed abnormal and that she was limping with one foot pointed in. That Sunday morning, we took her to urgent care. They told us that they did not think she broke anything but if she wasn't feeling better by Tuesday to bring her back in for follow up. They wrapped her leg with an Ace bandage, said to use Ibuprofen when needed for pain and sent us on our way. On Tuesday, the day we should have followed up, she seemed better, but on Wednesday...she went downhill again. She was running a low grade fever (99.5) and just seemed unwell. She was still limping, requesting to be carried and very cranky.

Wednesday, her dad took her to see her pediatrician. We thought for sure the issue with her leg was likely a result of the Mono. It just seemed too coincidental. Her pediatrician, whom we trust and adore, saw red flags right away in her exam and requested lab work. My husband went that day to the local hospital to have those labs done. I was so grateful that I didn't have to go with her for her very first blood draw. [Thank you Daddy.] That weekend, we went to my niece's 1st birthday party, a 6 hour drive from our home. Lucianna did not do well in the car ride home. She could not walk at all when she got home and was running another low grade fever. I think just being still in the car that long was very hard on her joints. It was so difficult to watch her be in pain and not be able to walk.

The following Monday - June 18th, our pediatrician requested that we come into her office to review the labs with her. My stomach was in knots - that didn't sound good. After some internet research as soon as she started symptoms, the only conclusion I could find was, Juvenile Rheumatoid Arthritis. Dr. Joe explained that she felt it might be either Lyme or JRA...the Lyme test turned out to be negative. She prescribed 5 days of Prednisone to see if that helped her knee. I truly think that if Dr. Joe wasn't so diligent and aggressive with her recommendations for us, we would be behind the 8 ball. I have read blog after blog about parents who had a lot of difficulty getting the right care for their child because many doctors don't know the warning signs. Dr. Joe knew exactly what was happening and encouraged us to act quickly.

She referred us to Children's Hospital in DC or Johns Hopkins in Baltimore. We were able to get into Children's Hospital first - with an appointment that week (only because they had a cancellation). We were seen by a doctor who barely looked 30 years old and who seemed fresh out of residency. We thought that we were going to be seen by Dr. Jung who is the head pediatric rheumatologist there. The doctor we had, unfortunately, seemed to have zero understanding of the emotions and concerns we felt as parents. She was very robotic in her communication with us and not forthcoming with information, we had to drag it out of her. She did not seem confident in her abilities. We had a few minutes at the tail end of our appointment with the head rheumatologist who said that we needed to wait for a formal diagnosis, as she could be experiencing a temporary inflammatory process, post viral infection, (aka: Transient Synovitis or Reactive Arthritis). He said he wanted to be sure this wasn't a temporary condition but his professional opinion was that it's JRA but the feel of her knees/joints. It was confirmed that the routine labs to test for inflammation were all elevated and consistent with an inflammatory process going on in her body. He requested more lab work and told us to come back in 4 weeks and we could see how she does.

Her final dose of prednisone was Friday, June 22nd, and she did okay those 5 days while on that drug. The day following the final dose, Saturday, she was active, albeit somewhat wobbly. She had a fun time playing with her sister and friend, climbing stairs, etc. That night she slept very poorly. She didn't have the strength to roll over in bed and th next day she woke up in a lot of pain. She couldn't all - all day long. That day, I was able to get her in a swimming pool and while she really enjoyed it, it did not help her to walk any that day. The next day I called her pediatrician and she prescribed, 1 teas, twice a day of Naproxen and 1 teasp once a day of Zantac to ease possible stomach upset from the Naproxen. Lucianna seemed to respond to the Naproxen but as soon as dose 1 started to wear off, she would start to go downhill again. Her low grade fevers returned, her inability to walk would creep up and once again, and she was asking for help to move around the house. Thank goodness I have a wonderful caretaker, Kylee who really did whatever Lucianna needed while I was at work.

On Monday, June 25th, we got her an appointment with a pediatric ophthamologist to make sure her eyes were okay. Along with the growth and joint complications to this disease, there can be complications related to eye health. The inflammation basically attacks the eyes and without warning or symptoms, can cause vision loss or in worse cases, blindness. To nip those issues, a steroid eye drop is prescribed but there are alarming side effects to eye drops - they can cause cataracts and glaucoma. How is it possible that we don't have a better drug that doesn't also cause irreversible eye damage?!?! We received great news, Lucianna did not have any current or past issues with her eyes. We were so happy. She goes back to the eye doctor in October for another check up and if she does indeed get diagnosed with JRA, will have routine eye exams to make sure her eyes stay well.

The week of the 25th she only had one day with a low grade fever and had the most mobility during the core parts of the day - 10am-4pm. After resting, she always had a tough time with her mobility but after about an hour or so was better. She would have some days where Bella would play Barbie's with on the coach. Bella has been so wonderful at adapting to Lucianna's limitations. Not only playing differently, but picking up a fallen crayon of Lucianna's or going to get something she wanted.

That Thursday, June 28th, we decided to go for a second opinion...not because we didn't believe Dr. Jung, but because we wanted a doctor that we felt a connection with and that we trusted could help us. We found those qualities in Dr. Edward Sills at Johns Hopkins. He is highly rated and in the top 1% of his field. Johns Hopkins was rate the #1 hospital in the nation. In just a few minutes with him, I could tell that he would be our doctor. At times, he said things that were over my head, but I am one to ask for clarification. He basically told us that at this point, she could still be experiencing a temporary inflammatory process going on - this could last 4, 5, 6 or even 10 weeks. He said her labs looked good, SED rate was normal, blood count all looked good, etc. and that the blood work didn't really match the physical symptoms that she is showing. Upon his exam of her legs, he found that she has fluid on one knee, some fluid on the back of the other knee, some fluid on her left hip and her right ankle. His opinion was that if we diagnose her with JRA and it's on her medical file, she may have challenges if she wants a job in the military, law enforcement, etc. He said, "We need to be certain." His plan is to treat her with Naproxen: 1 teas, 3x's a day - so he increased it by 1 teas. He wants to try this for 6 weeks and for us to come back and see if that seems to work. He warned us that it may take a month to see any true effects from the Naproxen. If Lucianna is doing well at that point, he will test her blood, and then very slowly wean her off the Naproxen (that could take 8 weeks or more). If she starts showing symptoms again during the weaning process, he'll diagnose her with JRA and potentially start her on Methotrexate orally. (He says she can take it orally to start, but that some kids for some reason, don't absorb the drug...those kids have to have it injected. I pray she is not one of those kids. I don't know how I would be able to do that.) He says that Methotrexate has been around a very long time and that in low doses is safe in kids. He also says, despite it being a chemo drug, it doesn't have those side effects at this low of a dose. He says that her symptoms, "look, smell and tastes of JRA", but that it is not necessary to label it until we know for sure. He says if we wean her and she is fine, end of story. He cautioned us that if we have to move to the Methotrexate though and it doesn't work for her, that there are another line of very strong drugs called Biologics, but he worried about those level of drugs because they haven't been used in kids for very long. There is little known about the long term side effects. I pray we don't even have to go there.

So to end this blog post - It is now been only 4 days on the 3x a day dose of Naproxen. She is mobile most of the day but does have a duck walk to some degree and has a lot of trouble trying to sit on the floor and needs carried up and down steps. She also is hypersensitive to injuries/falls because bumps to her legs hurt more than normal. She is not steady on her feet so we try to make sure to move obstacles in her way and be mindful of our dogs' clumbsyness so that she doesn't get knocked over! The Naproxen has kept her fever at bay and her lessened her discomfort. Today, July 2nd, it seems her ankle is causing her discomfort...I hope it doesn't get any worse.

I plan to update this blog as much as I can as we move through this journey. I am also going to post links to some of the websites, webcasts and videos that have helped me so that I can share information with others.
Lucianna's Proud Mama

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