Our journey began in June 2010. Our 11 year old daughter, Isabel had just completed 5th grade and was ready to begin a summer filled with horse camp, soccer camp, golf, swimming, camping, rock climbing and fun with friends. Late in June, we picked her up from a friend's house. Isabel and her sisters, Phoebe (9) and Tess (6), had a fun day helping with their friends new playhouse. They were all worn out and we were picking them up on our way home. Their friend lives just around the block- 60 second drive door to door. In that short time, Isabel's face broke out in hives and puffed up like a puffer fish. By the time we got home, we saw her feet were swollen and her feet and legs were covered in red blotchy hives. She had a low grade fever.
We immediately called the nurse's hot line and they recommended Benadryl in consistent doses for 24-48 hours and to follow up with the doctor if it continued. Off and on for the next four days, her feet and hands would swell and the hives would come and go. If we stopped the Benadryl or were even late with a dose, the red blotches came back.
While at a friend's birthday party, she became lethargic and complained of pain. They were swimming at the Lake and Isabel just wanted to sit on the shore watching. Her friend's mom is a nurse so she immediately called us and we came to pick her up. On the way, I finally listened to that inner mom voice and called to make her an appointment with Children's Urgent Care.
At this time, I was thinking allergic reaction and we just had to identify what she was reacting to and eliminate it from her diet/environment. Looking back, I see how optimistic that was. The doctor did an examination- asking the normal questions. Then, I could tell that the doctor was a bit stumped. When she told me she needed to contact a Rheumatologist, my heart sank. I knew this meant we were not dealing with a simple allergic reaction.
The doctor thought Parvovirus was the cause of the symptoms. They did not run any blood work and referred us back to our regular doctor and she was prescribed with an anti-inflammatory. The following week, we saw one of her regular doctor's associates and he also felt Parvovirus was the most likely cause indicating that Juvenile Arthritis or Lyme disease were remote possibilities. The doctor recommended with continue with the anti-inflammatory and follow up in 6 weeks, indicating that the symptoms would subside in that time if it was indeed Parvovirus.
During that time, the symptoms would mostly come but sometimes go. Off and on she was very lethargic. We continued with her plans to attend both horse and soccer camp. During soccer camp, I could tell she was holding back. At the end of each day, she seemed to have less energy than normal. She also injured her arm during that time- she managed to close her arm in the sliding door of our van. They thought it was just a sprain and they wrapped her arm. The healing process seemed to take longer than normal. In light of her diagnosis, I can see why.
At the end of our 6 weeks with no change in symptoms, her regular doctor ordered some blood work and gave us a referral to a Juvenile Rheumatologist at Children's Hospital. We were now into August. The blood work didn't reveal anything but the doctor had told us that blood tests are rarely conclusive in diagnosis in children. We turned in our paperwork for the referral and had an appointment for October 7.
Soccer season had started and Isabel played her best. Only someone who knows her well can tell that she is playing in pain. Also during this time, she was diagnosed with Sever's disease (heel pain) so we tape her feet for games and practice and she wears little gel/lift inserts in her shoes. She is still scoring lots of goals in soccer and having fun, but at the end of a game or practice, her joints are sore.
Her appointment at Children's finally came. In the time we've been dealing with this, I realize that our 3 month journey to a diagnosis is nothing in comparison to wait for most families. Isabel's appointment lasted about an hour and the doctor was just incredible. She spoke to Isabel directly, getting full participation from her. Our regular doctor is like that with all our kids but some doctors are not so I was so happy to see her specialist would be.
After a very detailed examination, Isabel was diagnosed with Juvenile Arthritis. She had her first set of x-rays on her feet, hands and wrists. (Remember that wrist she closed the door on? It still bothers her some) We don't have a specific type yet, but that will come in future appointments. Her next appointment is Nov. 23 where she will have blood work, her first appointment with a physical therapists and more x-rays. We left with a packet full of information.
We joined the Arthritis Organization and signed Isabel up for their pen pal program. I also ordered a copy of Raising a Child with Arthritis. It arrived last week and I've just started reading it. I'm sure as I learn more, I'll have more to share.
So, I don't know how often I'll post. Might just depend on how many emotions I need to release. You may even see an occasional post from other members of the family. Feel free to leave comments and let me know what brought you here. If you are a parent or you suffer from arthritis and you have a similar blog, please feel free to leave me a comment and I'll put a link on this page.
God's Blessings and Prayers!
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