Lost Aunty
New member
- Joined
- Nov 8, 2008
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 11/2008
- Country
- UK
- State
- England
- City
- Lincoln
Hey all. I need some help and advise please.
My 3yo nephew has just been diagnosed with Severe Bulbar Palsy. It has taken the hospitals 3yrs to diagnose this so it has been quite a shock.
This little chap has had issues since birth. Initially keeping him alive was the difficult part as his tongue and mouth muscles were so weak he either choked on his saliva or choked on his tongue. He has a Mickey Button now attached to his stomach and is tube fed special milk. You will have to excuse my ignorance to what all the special medical terms are as I am only given the info in laymans terms by my sister who is his parent.
Reading about Bulbar Palsy on the net I find that it is mostly in 55yrs and over and it is progressive. However this little man is 3yo and the hospital hasnt given a term of life although my sister is under the impression that his life will not be shortened by this...:!:
Im totally confused and would really like to know more especially anyone who has experiences....Im in England, Great Britain.
Many Thanks....Lost Aunty.
My 3yo nephew has just been diagnosed with Severe Bulbar Palsy. It has taken the hospitals 3yrs to diagnose this so it has been quite a shock.
This little chap has had issues since birth. Initially keeping him alive was the difficult part as his tongue and mouth muscles were so weak he either choked on his saliva or choked on his tongue. He has a Mickey Button now attached to his stomach and is tube fed special milk. You will have to excuse my ignorance to what all the special medical terms are as I am only given the info in laymans terms by my sister who is his parent.
Reading about Bulbar Palsy on the net I find that it is mostly in 55yrs and over and it is progressive. However this little man is 3yo and the hospital hasnt given a term of life although my sister is under the impression that his life will not be shortened by this...:!:
Im totally confused and would really like to know more especially anyone who has experiences....Im in England, Great Britain.
Many Thanks....Lost Aunty.