I was wrong. She never got better. She was in constant pain. At this point, we had Medicaid and private insurance and I had no qualms about taking her in to her pediatrician over and over again. Every appointment ended with “it’s just a really severe case of Epstein-Barr virus.”
I was getting so frustrated. I felt completely helpless watching my sweet bundle of energy deteriorate into a ball of pain and suffering, a shell of her former self. She missed out on so much. I had to cancel her gymnastics, play dates, and almost all fun activities. An extended trip with her father to Seattle ended in disaster when she came home feeling weak and sicker than before. Her only source of comfort was my use of natural remedies. They helped to ease the frequency of head and stomach aches, though she still had no energy.
When I enrolled her in a new school for 4th grade, I prayed that she would somehow miraculously be able to handle attending school. It was a disaster. I spent many mornings sobbing over the fear of the school district taking me to court because of my absent child. And she was in so much pain. I recall one specific incident where the teacher finally called me after her third time throwing up. I tried meeting with the principal who told me that unless she had a fever, she had to be there. But she didn’t always have a fever. My pediatrician finally suggested we homeschool her. After considering it in-depth, I knew this was the route we needed to take. So I withdrew her from school and began to teach her at home. But many days she felt too sick to even attempt school in bed.
Finally, I had enough. It had been almost a year at this point and her pediatrician refused to look for another possible cause. I got a second opinion—best decision ever. I went to another pediatrician who ordered a slew of lab tests. Four vials of blood and 5 days later, I got a call to come in. I was terrified she had cancer. Turns out, my child has low immune system-induced hypothyroid disorder. I didn’t see that coming. I didn’t even know kids could get thyroid disorders. There are many websites with information about thyroid disorders. You will need to search for those that are most appropriate for your needs.
I was thrilled to finally have some answers. But I was also determined to get her the right treatment. I was not about to delay her recovery any longer. With the help of a friend, I found a specialist in Oregon who did Skype appointments and provided a treatment I believed was Savanna’s best option. I had to hold a fundraiser to pay for the visit, but it was worth it. A few weeks later, she was Savanna again.
I’ve since found a local doctor to take over her treatment and plan to introduce her back to public school in 6th grade. The moral of the story? Advocate, fight for your child. If your doctor can’t give you the diagnosis or treatment your child needs, fight for it and find a way. It’s hard, I know. I strongly encourage joining online and local groups. There is always someone out there who did it before you. These parents are more than willing to help so that others don’t have to experience the frustration they did. And above all else, don’t give up!
Here are a few resources that I hope you will find helpful: SHARE is a local organization based in Midland/Odessa that hosts many parent groups and activities for families who have kids with disabilities, chronic illness, and special health care needs. They can also help you find resources in your area. Check out the information on this webpage under Diagnosis & Health Care – How to Talk to Your Doctor. The Parent Companion website has a great article: Use Facts to Advocate for Your Child. Cincinnati Children’s blog includes some great advice in Becoming Your Child’s Advocate: What Does it Take?. And don’t forget to search for more help on our Find Services, Groups and Events page.
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care