Today I had a conference with his doctors.It was genetics,neurology,speech,OT,PT,nurses, pediatrician, social worker,and a lot of other people.It was like a bad dream.They set me down and explained that Brady does officially have CDG.They are not exactly sure what type yet.They also said that his EEG was extremely abnormal.He was diagnosed with Lennox-Gaustat syndrome.They are adding on Banzel.They don't want to add on too many medicines since his seizures will probably never go away but they are going to give it a try.The hardest part was when they told me I need to make some kind of plan if he was to come into the hospital.The brain controls everything and since his brain is so abnormal even a common cold could have terrible consequences.I'm not giving up on my baby though.They said usually kids with all he has don't make it past a few months and almost 2 years later he is still fighting.I love this little boy with all my heart and I'm going to do my best to prove everyone wrong.They said he has about 3 weeks left in the hospital until he can go home.
Subscribe to:
Post Comments (Atom)
I'm sorry this meeting was such a downer. :( I hate when they pile things on us all at the same time.
ReplyDeleteThey think that my daughter has LGS, and if the Trileptal/Keppra combo doesn't keep the seizures at bay, we are adding Banzel as well. I hope it helps Brady's seizures quickly!