Chloe was born a Floppy Infant which means she has low muscle tone. She felt limp in our arms,like a rag doll. Chloe was a fast growing child, who has a T-shape body were two other issues that did not help her with this condition. At school she would cry a lot was the main issue teachers dealt with her.
Chloe, we now know was in chronic pain and could not fit in the small area and desk due to her size.
So it was time to homeschool and start looking for ways to get the proper treatment for what ever this condition is. The neurologist introduce her a medication that treats peripheral neuropathy. Chloe shoulders are asymmetrical so this showed improvement in her behavior, and her improved
interaction with the world.
The next we tried to figure out was why she had so much chronic pain in the forehead and Temples which caused a serious issue with grinding her teeth. The neurologist she was seeing did not have any answers to what was causing this facial pain. Her dentist used Botox which helped people with this grinding issue. Chloe got 8 Botox injection to different areas of her face. Chloe was laughing and giggling all the way home. I began to question doctors “Why would anyone be so happy to get 8 shots to the face”! Problems return in 6 weeks , so we did the Botox injections again and got the same response from it but the problems came back in 6 weeks. Because of the cost of Botox and short term reduction of pain we need to see what other options we have.
We found a neurologist that is familiar with Cranial nerve issues and he introduce us to this medication that works on the facial issue we mention. We continue to work on adjusting this medication.
So Chloe is being treated for a malformed nerve bundle on the left side of herupper back and Cranial nerve issues that causes her face pain.
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