Faith had her appointment at the movement disorder clinic this past week. The neurologist observed Faith and explained Faith’s movement using the term, “chorea”.
According to the NIH, chorea is an abnormal involuntary movement disorder, one of a group of neurological disorders called dyskinesias, which are caused by overactivity of the neurotransmitter dopamine in the areas of the brain that control movement. Chorea is characterized by brief, irregular contractions that are not repetitive or rhythmic, but appear to flow from one muscle to the next. The Movement Disorder Virtual University describes the affected child as appearing fidgety or restless. This is definitely what you see if you watch Faith! She is constantly moving! The video below displays Faith with what I consider some mild chorea movement. Her movements can get much faster and much more intense leading to a great deal of agitation.
As the neurologist told us, the word “chorea” comes from the Greek word for dance. The jerky movements of the feet or hands are often similar to dancing or piano playing. Faith often does appear like she is dancing with all of her excessive limb movement.
We talked with the doctor about how it seems that Faith’s movement has really gotten worse over the last year. She explained that babies tend to have chorea like movements anyway which is part of their typical development and that it is often when children are around 3-4 years old that chorea tends to get worse and more obvious. Faith is demonstrating chorea in her arms and legs for sure and we are also starting to see some movement in her tongue and mouth that she did not do in the past. Once again, more information that just leaves us with more questions. The typical causes of chorea just don’t seem to be the case with Faith. The simple answer and cause of Faith’s chorea is most likely the result of how Faith’s brain developed. Of course, we are still left with many concerns.
So, the plan right now is to work with medications to see if we can get the chorea under control or at least see some improvement. Faith’s leg movement seems to be the most problematic since it is causing her to injury herself. We are really hoping that we can get medications figured out to help our little girl be the most comfortable and functional as possible. If not, we may have to consider alternative options. Lots of decisions right now and things to think about but our ultimate goal is for Faith to be comfortable and happy so we are keeping that in mind as we make treatment decisions.
With the chorea and muscle tone issues, Faith continues to struggle in her car seat. Everyday travel is challenging in itself, but as we prepare to travel a longer distance going to the conference we appreciate prayers for a smooth trip for all of us. We are hoping that Faith will nap and stay as relaxed and comfortable as possible.
On a positive note, Faith is doing really well tasting and licking cold foods like popsicles and frozen yogurt. We aren’t making much progress with eating but she does seem more interested in tasting so that is where our focus is right now. She does much better when a spoon is not involved! Keeping things positive, productive, and safe! Click on the link below and then click the next link to view a video of Faith trying swiss cheese:
Faith seemed really interested in the swiss cheese. I love seeing her interest but sometimes it is a little sad that she is not fully able to enjoy food. We continue to work on strengthening her oral muscles for speech and eating but progress has been minimal. Faith’s increased interest is definitely a step in the right direction!
With each challenge comes an even greater love for our little girl. Faith is truly a blessing to us and to so many people in her life.
Keeping the faith,