New Member Confused

[Lost Aunty]

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.

 

[Lost Aunty]

Something that hasnt been mentioned by the Doctors but by someone I know is that America are doing Nerve Tranplants....Anyone know anything about this...

Pretty please...

 

[BethU]

Lost Aunty ... I am SO sorry about your little nephew. I have never heard of this striking someone so young. I hope some of our medically educated members can give you some insight.

I haven't heard of nerve transplants, either. I just want to say how sorry I am for the little guy, and will keep him in my prayers.

Take care.

 

[Al]

Hi lost aunty. I'm sorry to hear about your nephew. I have never heard of a child being afflicted with bulbar palsy either. I haven't seen any news on nerve transplants either. I'll look around and see if I can find some information for you.

AL.

 

[Al]

Here is a link for an article on nerve transplants. While encouraging it may not be what is needed. I couldn't find much about childhood bulbar palsy but if you google search that, there is a bit there.
http://www.barnesjewish.org/groups/default.asp?NavID=3300

AL.

 

[Lost Aunty]

Thanks. Will have a read and send it to my sister...

Does anyone know how Bulbar Palsy is caused? Especially in childhood? He had a traumatic birth and the following few weeks as he has Micrognathia. His mouth and tongue muscles are weak so when first born he used to choke on his own tongue. Plus he doesnt swallow his saliva so used to choke when he had a build up of that and had to be suctioned...

Im wondering if any mistakes were made at birth which brought on the Bulba Pulsy?