mild/moderate isolated bulber palsy in a child

[claire81]

hi everyone, i really need some help, my son benjamin is 15 months, he was born with a tof which is a condition where his ospeagus isn't attached to his stomach, he had surgery to correct this, also had a gastrostomy which is still in place, due to lots of concerns about the safety of his swallow, he had a emg bulber test the other week, we now have been told that he has mild/moderate isolated bulber palsy, what does this mean? is it managable or is it likely to progress and get worse, i am heart broken by this news and really would be grateful for some advice.
thank you, claire

[MG (Admin)]

Please send us the full summary of the neurological exam

[claire81]

i haven't got the neurological report, but we had a meeting on monday with the neurologist, they said he has damage of the cranial nerves, that affect the jaw, tongue etc! we have been told it won't progress as it is a birth defect, but he will always be tube fed, and will have very limited food intake due to aspiration issues, he doesn't really want to eat anyway, he has been tube fed since he was a day old as he was born with long gap osphegeal atresia. He is fed over night, but wakes up with lots of secretions, any information would be much appreciated