Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

When You Can’t Get a Diagnosis For Your Child, Part 1

01/27/2016 | Published by: Kelli Zermeno

Almost a year and a half ago, my daughter started getting sick during the second semester of third grade. Under normal circumstances, Savanna is an extremely energetic girl—annoyingly so. For example, she does cartwheels back and forth around the kitchen when you are trying to talk, has to stand to eat – that kind of energetic .  So when my little girl began coming home, falling asleep immediately after school and not waking until the next day (not even for dinner), I knew something was wrong.

At first, I thought she was going through a growth spurt. She’d experienced “growing pains” in her legs for about a year prior. I later found out that was due to magnesium/ calcium deficiency. But the pains didn’t stop. Then, she started getting headaches—so bad that they would keep her in bed and bring her to tears. Then the stomachaches began, and would lead to nausea. She would become feverish—sometimes low-grade, other times burning hot. My extremely healthy, never-gets-sick child was now constantly missing school and it was stressing me out. I was getting notes from the school about her absences. The school district was threatening legal action because of them. I didn’t know what to do because I couldn’t figure out why she was ill. When I tried to get her to “be brave” and go to school, she’d cry and cry about her pain. I was heartbroken and torn.

To make matters worse, her father had lost his job and medical coverage. Then, he was told at his new job that coverage would start within 30 days.

I opted not to apply for Medicaid, because at the time, the kids were fairly healthy and he offered to pay out of pocket for my older daughter’s medication. Thirty days passed, and no coverage. The new company kept stalling. My daughter’s father quit that job and went to another. My children were left again with no insurance.

All the while, Savanna was becoming more ill. In hindsight, I know I should’ve applied for Medicaid sooner. But I was so overwhelmed with her condition, loss of child support, a job I lost, and the overwhelming amount of required paperwork, that I put off applying as long as I could. I finally put in the application and about a month later, got approval.

I took Savanna to her regular pediatrician who had been very helpful in sending in sick notes to school even though I couldn’t afford to take her in. She ran tests and found out Savanna was positive for Epstein-Barr virus. It explained so much—-the exhaustion, stomach pain and headaches. But I felt uneasy about the length of the illness. It had already been four months in at this point and she wasn’t getting any better. Wasn’t it supposed to start subsiding after a month or so?

I knew that something else was wrong. But I was not completely convinced that this was the only problem. So, I followed the doctor’s instructions and spent the summer trying to nurse my poor kid back to health. I thought, She’ll be much better by the time school starts back up.

To be continued…Stay tuned for Part 2…In Part 2 of this article, I will share additional resources and ideas for things you can do to get an accurate diagnosis for your child.

In the meantime, you can check out the Rare or Undiagnosed page on this site and a video that might help as well.