Nicole Grace ’s Story

Site created on January 4, 2023

It all began when Nicole was 7 years old in 2017. She was out jumping on the trampoline and came inside complaining of dizziness. I told her to lay on the couch and it passed and we went about our day. The dizzy spells began to happen more and more often so we took her to the pediatrician. He ran some blood work and realized that she was recovering from mono.
By January 2018 she was missing school and spending a good part of the day feeling very dizzy and weak. One evening she got up to walk to her room and her right hip was giving out. By the next morning she was unable to keep her balance or control her feet.
We rushed her to the local children’s hospital and they did tests and ruled out anything life threatening and sent us home with no answers. At this point her dizzy spells were still leaving her at times and she could walk and function normally in between them.
In April of 2018 we got in to see a neurologist in Mobile AL and he immediately admitted us for extensive testing! All results were normal again however and we were sent home again with no answers. Thankfully at that time her good times were getting longer and dizzy spells were getting shorter.
For the next four years life was mostly normal. She would have occasional dizziness, fatigue and her legs were always weaker than before it all began. There was only a couple time when her walking was impaired and a good nights sleep would bring her back up to normal.
In June of 2022 she contracted Covid. In the weeks following Covid we began to notice her getting weaker and barely making it through a school day.
In September she had a routine visit with her neurologist and he noticed weakness in her legs and prescribed physical therapy.
Unfortunately after only 2-3 sessions of therapy her weakness progressed to her legs simply not listening to what she told them. She began twisting her ankles with every step which led to the decision to use a wheelchair.
We took her back to the children’s hospital and the on call neurologist said he thought it was functional neurological disorder and referred us to a specialist in Birmingham. However it seemed a diagnosis made pretty quickly without any recent testing. We decided to take her back to neurologist that she had 4 years ago when it all began.
At this point she began to have pretty awful tremors and random times of the day in her legs. Especially the right leg. She also had a few tremors in her arms and shoulders.
In November we went back to the neurologist and he admitted her for testing again. Again test results still came back normal. However her hands curled in under anesthesia and the way she was walking suggested a movement disorder of some type. Her neurologist suspected juvenile Parkinson’s and started her on medication for it. Her tremors completely stopped within a couple weeks of starting the meds and she had started to show slight improvements in her walking.
Fortunately the neurologist doesn’t think it’s Parkinson’s. He said to continue the meds since they help the tremors and to seek a second opinion. He doesn’t agree with ER drs diagnosis of FND because of her hands curling and how she toe drags when she walks. He says that suggests an organic cause that we haven’t found yet. However He recommended going to the FND clinic to get a second opinion since he feels like he’s done all he can again.
And that’s where we stand today. Still not sure what she has. Praying for answers always.. She’s 12 years old and one of the strongest people I know🤍
PS..A lot has went on since I wrote this story. We still don’t know exactly what it is that is making Nicole so sick. She does have dysautonomia which makes it hard to regulate her blood pressure. She has to increase her salt and water consumption to help with that. Geneticist says to stay on Parkinson’s meds since they help and they want to keep testing her as research catches up. Follow along with updates as we continue on the search for a diagnosis. 🤍

Newest Update

March 20, 2024

Journal entry by Andrea Koehn —

   Good morning! It’s been awhile again since I’ve posted anything. Things have settled into a rhythm and I’m not even sure what to say. I could say Nicole has been doing pretty well. That would be true compared to last year at this time. I could also say that she is struggling daily and that is true. We’ve come to a place with her illness that is long and discouraging. By most outward appearances she is doing well. She goes to church and smiles. Sometimes she feels well enough to help with the meal and house work but that isn’t very often right now. She is having a lot of dizziness and that’s a drain on her mood and emotions. Her body is also not regulating her temperature well and she is either shivering or sweating. Her knees are unstable and there are days when she stumbles a lot. 
   This time of the year with field trips and end of school activities approaching is rough. We have tried to come up with a field trip idea for her. It’s just discouraging that there isn’t anywhere to go that doesn’t include a lot of walking. She is SO TIRED of having to think about having a place to sit if she needs it. Stores are so hard! I’ve went to doing all curbside pickups for groceries or we have to use the wheel chair. Something about the florescent lighting and being upright that long, is too hard for her. She’d rather sit in the wheel chair than end up sitting or laying  in the isle. 
   As her mother I’ll be just as honest and open as I can. I pray every day to know how to handle her illness in a way that I am not making it worse. I swing between knowing that she has to put herself out to get better and realizing her limitations. And then I start to imagine how people are viewing her situation and I imagine the thoughts they are having. There is a song that says ‘If you are small in your own eyes you won’t be troubled’. I think of that phrase all the time! It’s not about me! If I am humble and can leave it all to God it doesn’t matter what others think.  My daughter needs me to help her right now. She needs an understanding mom to care for her and encourage her. We have to come to the realization daily that she is still sick. It’s a chronic illness. We can’t wait until she’s feeling 100% again before she goes out and about, but she also needs so much more rest than others her age. Surely there are other moms out there that face these same challenges. Let me know if you want to chat! ❤️ It can be a lonely battle. 
   I wish you all a good day today! 🤍 Please continue to pray that we can know what and how to do~ Andrea 
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