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

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

Invisible Disorders — Part 1

03/29/2016 | Published by: Kelli Zermeno

My daughter was at the pinnacle of good health. A vibrant, energetic 9-year-old girl—too energetic at times. I cannot tell you how often I’d be trying to have a conversation with her and she’d be talking to me while doing cartwheels in the kitchen. She couldn’t sit still, and often ate while standing up.

I’m a good mom. We eat healthy, but I’m not insane about it. I try to make healthy food fun, turning junk food favorites into healthy meals. We are mostly gluten-free, but I do allow the occasional pizza or grilled cheese sandwich. We take vitamins, use essential oils, and avoid unnecessary medication. My kid’s friends call me the “hippie mom.”

But my daughters and I are battling invisible disorders. I’ve learned to live with mine. I honestly used to think it was normal, that everyone battled with exhaustion the way I did. I was a young mother, college student, and employee––all reasons for me to be exhausted. I’ve found things that help. I take a series of vitamins and coffee, attempt to get enough sleep at night, pray, attempt to de-clutter and remove unnecessary stress from my life. But it’s still there. I didn’t connect the dots until my daughters started having problems.

And now my daughters are battling the same things, only far more magnified. I don’t know why. I don’t know about their dad’s side of the family, but I now know that thyroid disease and a myriad of other strange and invisible disorders plague my mother’s side of the family.

My 14-year-old has been steadily and rapidly gaining weight since she was a toddler. No diet, exercise, or eating plan has stopped or reversed it. I’ve been called a bad mother, an enabler, not believed by doctor after doctor as I did my best to find help for my little girl. And now, I have a 240-pound fourteen-year-old girl.

After lots of research, I finally found a doctor who would discuss and prescribe a low dose of natural thyroid medicine for her, and for the first time ever my daughter has lost 5 pounds. It’s a small victory, but I will take it and run with it! And maybe, with that glimmer of hope, we have found something to help her.

I’ve learned to listen to that inner voice that says, “You know your child better than anyone else.” If you believe there is something going on, there probably is. Find a doctor for your child who will listen to you, respect your opinions, and discuss your concerns. 

In Part 2, you will learn more about my older daughter who has an auto-immune disease––and how a diagnosis still offers very few answers to the disorder.

For more information on specific diseases or disorders, use the search engine on Diagnosis A-Z on this website.


Read More Posts from Diagnosis & Healthcare

Social-Emotional Health

Children’s social-emotional health is an important part of their growth and development. Here are some ways you can help your child.

All American Kid

With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.

Changes on the Way

The time will come when my daughter needs a feeding tube. Not yet, but soon.