I've been dreading writing this post because, honestly, the process of trying to figure out what was wrong was pretty traumatic. So many doctor's visits, so many opinions, so much pain for one little girl. If you haven't already, please read the first blog post "Early Symptoms". I am going to continue from where I left off. So, Christmas Eve they prescribed her the antibiotic amoxicillin for 10 days for her double ear infection. She had a severe allergic reaction to the antibiotic about a week in. She had a rash and hives covering her entire body. Palms, face, belly, feet, even her eyes were red. On top of all that, she was still acting like her ears were bothering her and she had a really stiff neck.
We went back to the doctor. We went after hours because she was in so much pain. I brought up that she still was acting like her ears were bothering her and her neck was super stiff. The doctor said in response to her neck, "Oh, it's probably from the ear infection or she injured it." He put her on a zpack (azithromycin) for five days.
Five days later, Isla was still acting like her ears were bothering her and she still had an incredible stiff neck. We went back to the doctor after we realized she probably still had an ear infection. We saw the same after hours doctor. I brought up her stiff neck again, he told me "She probably injured it and you keep reinjuring it." I knew that I had not injured my child. He prescribed ANOTHER zpack, higher dose for a shorter amount of days. At the time, we didn't know that you shouldn't prescribe a zpack within the same month if she had already tried a zpack.
A week later, she still was acting like she had an ear infection. We went to after hours again (the worst symptoms always happened at night), but we saw a different doctor this time. I told him about her stiff neck and he told me to keep an eye on it. She still had some fluid in her ears, but he didn't prescribe her anything because he saw that she had been prescribed so many antibiotics that he wanted to see if it would go away.
The ear infection went away, but her stiff neck didn't. I took so many videos of her looking around to show how bad it was. I felt I had to prove that she was struggling because I knew people didn't believe me. Every time I laid her down for a diaper change, she cried. Every time she fell down on the ground, she cried. Every time her brothers bumped into her, she cried. It was so incredibly sad. I knew my daughter was in pain, but no doctor believed us. They thought I kept injuring it.
On February 11, a little over a month into everything, she randomly had bruising on her chest. Little tiny purple dots. I called the pediatrician's office and they said my primary doctor wasn't there, but we could come in and see another doctor. Isla and I went in and met with the doctor. She took one look at Isla and said "We are going to test for all the scary things to get some peace of mind." Blood cancers, her levels, etc. She sent an order to American Fork Hospital and I drove straight there. My mom was working. She drew Isla's blood. Isla didn't even cry.
Then we waited. I was at work the next day when I saw that the pediatrician's office was calling me. I ran into the hall and I answered it. The nurse said, "We got her results back, and they are not clear." My heart dropped. I instantly felt sick and started tearing up. I took a deep breath, "Well, what does that mean? Not clear?" The nurse responded, "It means her levels are not normal. Her body is fighting something and we need to figure out what it is fighting. Do you have time for an ultrasound today on her lymph nodes?"
We went to Primary Children's that day to have her get an ultrasound on her lymph nodes. They were larger than normal, but nothing was in them. Or so we thought.
Then came the tests. Blood cancers came back negative. Epstein-Barr came back negative. Autoimmune disorders came back negative. Negative, negative, negative. We had to go back to American Fork Hospital on Valentine's Day to draw Isla's blood to run more tests. This time she was not happy about it. She cried and fought while I had to hold her down so they could get a needle in her arm. I couldn't hold back the tears. I felt so bad.
Every test we ran, they all came back negative. I felt defeated and just overall tired. She wasn't getting better. I prayed that it would go away. That we would wake up one morning and she would be able to move without pain. But that never happened.
On February 15, we went to Airborne (a trampoline place) with friends. They have a daughter only two months older than Isla. I couldn't believe how much she could move around. Her dad was throwing her around and she was just giggling. Meanwhile, Isla was walking very slowly and crying every time I picked her up. Jordan says that day is when he knew something was very seriously wrong. But I had known that for awhile.
We scheduled a MRI for her head and neck for February 24 at Primary Children's. It seemed like an eternity away. The next thing that happened was extremely traumatic for me, but that story needs it's own post. Thanks for reading and being here for Isla's journey.
Love, Megan
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