Our little Lily has been sick this week and it's been pretty scary. I'm writing this post on Friday, April 9th. As of today, she is running around and acting normal, no fever and her rash is clearing up. But, it's been a long week.
On Easter Sunday, Lily woke up with a rash. The rash was mostly on her arms and legs. I thought it was probably an allergic reaction to the antibiotics she had been on (Omnicef). I gave her some Benedryll and I thought we'd just watch her and make sure it went away. After about an hour, her knees started to swell up. We couldn't really tell if the swelling was from the rash or from something else. I called my pediatrician. The doctor on call thought the Benedryll was probably the right thing to do. She said that allergic reactions can take a day or two to clear up, so I shouldn't expect immediate results. She said to come in the next day if it got worse.
It got worse.
On Monday, Lily's knees were dark purple or black. Her feet were swollen. The rash had spread and changed. It was now all over her body. I called my pediatrician as soon as the office opened and I got an appointment. I took Wyatt and Madeline to MDO and tried to keep Lily (and myself) calm for the morning. Her appointment was at 11:00. Lily's doctor was worried. She thought that it looked like more than an allergic reaction. She called the rash Erythema Multiforme. Lily had some blood drawn and we need to wait a few hours for the test results. The scariest thing was that Lily couldn't walk. The swelling in her legs was making it too painful to walk. When she would stand on her own she would start shaking.
Monday night, Lily woke up 4 times feeling very itchy and uncomfortable.
I talked to my pediatrician on Tuesday morning. Lily's test results showed only 1 concerning issue. She was swollen. We could tell that from looking at her, but the test level was extra high, so there was concern that there could be swelling in her heart. We needed to take a trip to the cardiologist.
Lily had an EKG and an Echocardiogram. Her heart was normal. There was no swelling or any indication of illness in her heart. We were so relieved. Lily got to bring home a picture from the Echocardiogram that showed all 4 chambers of her heart. She was excited about that.
I spoke again with my pediatrician and she was so happy to hear that Lily's heart was healthy. She said that we had eliminated all of the emergency situations, and that we should just wait and see for 24 hours what happens.
On Tuesday night, Lily got a fever. It never spiked very high. It stayed between 100.8 and 101.3. The fever persisted all day on Wednesday. The swelling in her ankles and knees and hands was significantly reduced. Her eyes and face were a little swollen now. Her rash seemed to track with her fever. As the medicine wore off, the rash looked worse. On Wednesday afternoon, I spoke with my pediatrician again and we decided that Lily needed to see a Rheumatologist. Appointment made for Thursday at 3:00. Wednesday was the low point of the week. Her fever made me profoundly sad. I didn't know what was wrong with her, but my internet research led me to scary things like Rheumatic Fever or juvenile arthritis. I spent the day crying off and on. All of us got a good night of sleep on Wednesday night, so we woke up better able to face the day on Thursday.
Lily woke up looking and feeling tons better on Thursday. Her rash was MUCH better. She still had a fever, but her behavior and mood seemed to be back to normal. She wanted to get dressed. She was playing with her brother and sister. She could run. She was itching a lot more than the days before. I gave her some Benedryll and ibuprofen. I spent the morning filling out paperwork and getting ready for the appointment.
At our appointment, the doctor spent a lot of time talking to us and listening to what we have been through this week. She carefully examined Lily and was amused at her flexibility. Lily was her silly self and spent the time in the doctors office coloring and jumping on the colored squares and acting like a silly 5 year old. Unfortunately, medicine isn't an exact science. We still don't have a diagnoses. But we have nearly ruled out the scary things that it looked like earlier in the week. Most likely, Lily does not have
Rheumatic Fever,
HSP or
SOJIA.
As of this writing, we think that Lily may have had a strong immune response to either a bacteria/virus or to the antibiotics that she was on (for strep). If that is the case, she will continue to get better and there will be no lasting effects. Another case may be that Lily has some kind of reactive arthritis. Her Rheumatologist wants to check her again in two weeks, to see how her swelling looks. She also wants another blood test in 4 weeks. Lily is going to be on an antinflamitory for now, just in case.
Today (Friday), Lily looks great. She still has some general redness, but nothing even close to what she looked like on Monday. I kept her home from school again because she did have a fever yesterday. But, she does not have one today. I am very hopeful that this was an isolated incident and that there will be no lasting effects.
Whew... I couldn't have gotten through this week without the support and help from Scott's parents and the preschool where my kids go. Dennis and Marcia were available and on call to help us 24/7. They took care of Madeline and Wyatt every day this week. Escuelita was wonderful too. They let me bring Wyatt on days that he is not scheduled. It is a big relief to know that my children are being loved and well cared for in my absence. My family and I are so lucky to have such wonderful family and friends to help us through these things. Thank you!
