It’s hard to see your child suffering in pain. It’s even more challenging when they can’t figure out what is causing the pain. A few days after our first visit with the gastroenterologist the nurse practitioner called to give the results of Bree’s labs. Luckily they all came back normal, which was great but why is she in pain? Why is she still losing weight?
The nurse was nice and tried to calm my nerves by telling me they checked her for all the “major” things which I’m assuming are cancer organ failure etc. Don’t get me wrong, I’m beyond thankful we have ruled out the “major” things. I just want to fix this for Bree. I want to make the pain go away.
I also think that a nine-year-old girl in pain and losing weight is a “major” thing. It’s major for her and for our family. Bree has now been sick for almost two months…
Bree is followed by a rheumatologist for autoimmune issues most likely juvenile rheumatoid arthritis but given some of Bree’s symptoms she wasn’t given a 100% diagnosis of JRA. I think her official diagnosis may still be a non-specific autoimmune disease with JRA symptoms. We keep watching and treating symptoms as they appear. One autoimmune disease always on our radar is Crohn’s disease because Mack, his brother, and his cousin all suffer from the disease.
We had some genetic testing done last year on Bree and one of the markers she tested positive for is the Crohn’s disease marker. The marker is by no means a diagnosis, and she may never even develop the disease. My understanding of it is that her body may be more predisposed to develop the disease which we already knew given our family history.
This all started the first week, or so in January, we thought she woke up with the stomach virus which was going around everywhere. Two days after the single vomiting incident Bree developed severe lower right quadrant pain.
We ended up in the ER fearful she had appendicitis, luckily they ruled out appendicitis, but she’s still suffering from the same lower right abdominal pain. (Sadly, I think appendicitis would have been a lot easier)
Over the last six weeks, Bree has lost fourteen pounds. Eating causes her pain to increase, it’s also been a struggle to keep her hydrated she really isn’t interested in drinking due to the pain, and she won’t drink smoothies, protein shakes, milk shakes. Mostly, she is drinking small amounts of apple juice and water and will tolerate small pieces of bread throughout the day.
Friday, I brought her in for a follow up with the GI after examining her they sent her for an immediate ultrasound, labs, and pushed the colonoscopy/endoscopy for six days later instead of the late March appointment we already had scheduled.
Bree is a tough kid, she’s used to having chronic pain and has learned to live her life despite constant joint pains. I think she handles her chronic pain better than some adults. However, this specific episode of joint pain, swelling, rashes, abdominal pain has completely sidelined her she hasn’t been to school in over a month, we started home tutoring, and her teacher has set up online assignments for her to do via a Chromebook.
Luckily, Bree has a few really great friends and family who have been texting, calling, and if she’s up for a visit, they will stop over to try and cheer her up. Unfortunately, Bree hasn’t even been up for many visitors other than her cousin Layla. Bree doesn’t want her friends to see her in pain.
It’s hard to watch your daughter laying in a hospital bed with tears streaming down her cheeks. I know Bree was trying to be tough and hold back the tears while the ultrasound tech pushed the wand deeper into her abdomen to get a good image, the pain was just too much for her. It was heartbreaking, and I wish I could trade places with her.
Bree is starting her colonoscopy prep tonight and goes in for the tests on Thursday. I feel guilty for praying we get an answer from her test on Thursday, such as Crohn’s disease or something else minor (not that Crohn’s disease is minor) and manageable.
It may sound crazy wishing they find a condition, but obviously, something is wrong. If it’s Crohn’s disease it won’t be easy, but we know how to handle it, and she will have the support of her father and uncle, and I think it will help knowing she’s not alone.
If we don’t get any answers, we are starting at square one. I don’t want Bree to be sick, I need a plan to make her feel better. This may sound selfish but, I know she’s also scared, sad, and frustrated. Bree misses her friends and wants to get back to school, figure skating, and soccer.
Even though I wish I could make this all disappear for her, I can’t, but if we get a diagnosis, we can come up with a plan and get on the road to recovery.
Feeling helpless when your child is sick and in pain, is so far the hardest parenting struggle I have faced.
(Bree drawing a rose with the art set Nana and Pop sent to cheer her up. Bree loves to draw when her hands don’t hurt. )