I am sure you all want to "google" this long and hard to pronounce phrase. I will make it easy for you and explain in English what it means.
Benign: Of no danger to health
Paroxysmal: Reoccurring
Torticollis: Muscle contracting in Neck to cause abnormal position.
Since Isabel was born, she has had 6-7 episodes of this exact nature. We took her to the pediatrician but they could not diagnosis her. They gave us many possibilities, but none really fit her condition. First of all, it was very hard to explain and hard for the Doctor to understand. Second, it was not a reoccurring instance. I did my own research but couldn't come close to anything helpful.
Finally, her last episode was in June, we decided to record it. Thankfully our doctor referred us to a neurologist after watching just a short clip.
We took Isabel in yesterday. It was a great success. At first it was hard for the doctor to believe anything was abnormal. Isabel was her happy self. She responded 100% to all her tests. Isabel even sat her lap and talked for about 10 minutes straight. I am sure giving her Sh-pill of what was wrong. It was quite entertaining actually.
The doctor finally turned to us for the Yes or No portion. Josh and I did a 100% job as well. The doctor ruled out any life concerns for Isabel, which was a relief. We showed her the video and without any real brain tests yet, she had her diagnosis is mind. She went and got a different doctor to make his diagnosis. He gave the same result as well.
Benign Paroxysmal Torticollis was the end result. They still would like to do an EEG, but no MRI or cat-scan is necessary. We were glad to hear that because they didn't want to sedate Isabel if there was no real need.
This condition is only seen by Pediatric Neurologist maybe once a year in infants. It is rare with no cure. Luckily it only effects children and can be out grown by the time she is 5 years old. The down side is that in can be an onset for Migraines when she is older.
The video we provided was especially helpful. From what they told us, they have no really good or recent documentation of this disorder. They found it a good learning tool and asked if they could use the footage for training purposes. It was quite funny, by the end of the appointment, there were several doctors and interns in the room watching the video. Every time we played the video, Isabel could hear her own self and would yell, "baby."
So we are relieved that we have an idea of what is happening with Isabel and that it is not life threatening.
If you'd like to see the video let me know.
