I feel like we have been fighting the illness our daughter has forever, even though it’s only been 7 years since her first symptom showed up. But when a child is fighting an illness, every day can feel like an eternity!
Faith’s first symptom to show was in her eyes. The next was in her gait ~ the unsteadiness and lack of balance. She stumbled a lot, but we also just thought maybe she was a bit clumsy. It wasn’t until her 6th birthday when I realized she wasn’t getting better, and it wasn’t just a phase she needed to “grow out of.” Also, some friends and family members noticed it more than us since they weren’t around her all the time like we were.
So, fast forward 7 years… she now wears glasses which only partially help her eye issue(s). We have done a multitude of blood work, including genetics testing, essential fatty acids, 2 nerve conduction studies, an MRI of her brain and spine, a muscle & nerve biopsy, an EMG, vitamin panel, an endoscopy, and even MORE blood work. In the process, we have ruled out all the major and even some minor diseases like MS, CP, Muscular Dystrophy, Friedreich’s Ataxia, cancer, etc., but we’ve exhausted 3 neurologists! They all really have no idea what else to test for.
How is that possible? How could we be the parents of the child they can’t figure out?
I have learned a lot about the medical profession throughout this journey… what they know, what they don’t, and what it really means to “practice” medicine. I have also learned a lot about myself. When you are thrown into something like this, you find out what you’re made of. It drives you to keep pushing, keep asking questions, keep researching, keep sharing what you learn.
It wasn’t until just recently that we tried a new alternative route for testing and found that a bacteria could be causing her issues. Then, we did further testing through other alternative means and found that she could be fighting Lyme Disease. Now here’s the real kicker…
Since her Neurologist didn’t know what to test for anymore, I called her and asked if she would test for Lyme. She said it was so extremely rare in GA that she doubted Faith has it and that you can have false positives. Well, first of all, the CDC reporting for Lyme cases is different for the south than in the north, where you hear about most cases. If they would make the reporting the same country-wide, we may find that more and more people have this disease. Secondly, she has NO idea if Faith could be the next person to be reported positively. Thirdly, the tests for Lyme are so inaccurate that less than 1 of every 2 infected will actually come back with a positive test.
Anyway, she agreed and we had the test run. Unfortunately, I believe the lab company just slotted Faith in the “negative” range but didn’t list the actual antibody count. If she’s producing any antibodies, as I have learned, she is fighting the bacteria. It may just not be enough for CDC standards of reporting! Crazy, huh?
So now what?
Now we keep fighting. We keep looking. We keep researching.
We have to go outside the “normal” modern medicine means and take our daughter’s health into our own hands. We find someone who is willing to keep searching with us. We do what we know to do to make her better. We know she’s Celiac, so we are gluten-free. We know she gets tired easily, but pushes through anyway. Some days, we have to be the ones to stop her and make her rest.
It’s a battle that keeps waging, but we are fighting to the end. I am determined to see her get better, as she was once with alternative therapies… and I know we are headed there again… however long that it takes.
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Jessica Stone is a wife, mom to 4, and owner of her own business in the fitness industry. She has 3 special needs children, with one child with an undiagnosed neuro-muscular condition that limits her mobility. She enjoys sharing what she has learned through her trials, experience, and research with other parents who are looking for support, encouragement, and helpful information. Get her FREE eBooklet Five Steps to Losing Those Last 10 Pounds today for simple steps to help you trim up and fit into those fashionable clothes you’ve always wanted to wear! Connect with Jess live today on Facebook!