Another possible Dx

Well we got a call the other day from Catie's geneticist. He wants her to come in for another MRI. They think she may have something called Batten Disease (Neuronal Ceroid Lipofuscioses). Its a inherited fatal disorder of the nervous system. it causes:

visual impairment

seizures

decline in cognitive function

personality and behavior changes

loss of communication skills

loss of gross and fine motor skills

abnormal movements

decreased body fat

decrease in muscle mass

scoliosis

breath holding spells

poor circulation

difficulty swallowing/eating

teeth grinding

constipation

eventually death

yes Catie does ave several of these symptoms but i really don't think that she has this!! but i agreed to the testing to rule it out. the children with this end up in a complete vegetative state before they pass away. I am not willing to accept that is what is going to happen to Catie. She seems to be pretty stable right now. please everyone please keep her in your prayers.