Brigham's Story

photo by CTR IMAGE

Brigham was born full term and had an uneventful delivery. The first symptom's Brigham presented with where very low tone, uncontrolled movements while sleeping, and sensory problems in his hands and feet that caused pain when they where touched. 

 At 7 months during a regular checkup his doctor told us he thought he should be seen by a neurologist and start physical and occupational therapies.  Within a month Brigham was seen by a neurologist and he started therapy shortly there after.  After seeing a neurologist several blood tests where ordered for neuromuscular and metabolic disorders and a MRI was scheduled.  All tests came back normal. Brigham then had a nerve conduction test and an EMG.  Both these test where normal and Brigham was sent to a geneticist.  Several more blood test where ordered and they all came back normal.

Despite Brigham's problems he was starting to progress and seemed to be cognitively normal.  He started sitting up at about 18 months. and we were happy with his progression.  A few months after
Brigham started sitting up he started having uncontrolled movements called athetoid movements. They where fairly mild at first, but progressed very quickly and within a few weeks Brigham could no longer sit up and he spent an entire night in the emergency room with movements so severe he didn't fall asleep until 6:00 the next morning.  After this night Brigham's movements at night got so bad he has not slept through the night again without being medicated.   He had another MRI and two EEG's.  All were normal. 

It has been over a year since the Athetiod started and Brigham still can't sit independently.  Most days he can feed himself finger foods and drink from a sippy cup.  Days when his movements are more severe he can not nap and has great difficulty feeding himself or drinking from a sippy cup. Brigham is small and his growth continues to not be as strong as the doctors would like.  He also seems to have a weaker immune system.  His neurologist feels he most likely has some type of central nervous system
disorder or a movement disorder. 

Brigham is a very happy and smart little boy.  He continually surprises his therapists and doctors at the things he learns to do despite his disability. Brigham loves life and brings joy to everyone that he meets.  
Thank you to Brigham's sweet mom Carol, for sharing this information with us!