My 12 month d baby has balbar palsy.

bowerdott

My 12 month son had problems with swallowing from birth, he lost weight and placed on NG feeding after 3monrhs. After countless test and examinations we discovered via video fluoroscopy that he has a 'very severe pro-pharyngeal ' I.e. Swallowing problems arising from nueouroligical impairment. He is due a head scan next month , his last when aged 6 months old showed he has issues with his brain .

In terms of physical and mental development, he has low muscle tone , he is able to sit up  without support , he just started moving his legs more purposefully. He is beginning to smile more often , and started to babble .

According to a doctor specialising in child development, he has moderate learning difficulties, advised he might walk when he is 3 yrs old.

He have a provisional diagnosis of bulbar palsy. Genetic test prove negative, so does eeg scan.

Would appreciate an email exchange with parents of similar issues.

Sam_Alumni

Hi @bowerdott welcome to the community.

Thanks so much for sharing your story, there is lots of information for parent of disabled children here that might help you.

@garethbeach @Acranea @phoenixpd @Brightsky_101 @JoJo123 do any of you guys have any ideas? 

phoenixpd

Hi I'm a mummy of a 12 month old  (8.5 months corrected) with quad Cerebral palsy. 
I'm not familiar with balbar palsy but I'm happy to chat with you if your would like to x 

Blue Frog

Hi @bowerdott welcome to the community, my little girl is 3 she has global developmental delay, feeding difficulties and very low tone.  Sounds like your little boy is doing really well with his sitting up, it's pretty hard to do with low tone!

Are you getting any help from portage? They are brilliant for education and play support for little ones. 

These are pretty cool things too http://www.tubiefriends.com/

bowerdott

Hello Blue Frog, thanks for message. 
Yes portage are involved as is OT. 
We now have a feeding machine to administrate milk via NG tube.

Blue Frog

Aww that's good, how are you getting on with the feeding pump?