Bulbar Palsy ... Trying to find others with this ..

[Toots13]

Hi, my daughter has bulbar palsy . She has an unsafe swallow and is gastronomy fed. We suction all her secretions. She also has low muscle tone, and is very floppy. She is 13 months old and a true fighter. Does anyone else have anything similar? It's a lonely place when your child is unique .

[lexie lamb]

hi, dont be lonely! i have a little boy he is four years old, he has very little suck/swallow reflex and has excessive secretions. we have suction but i believe this to stimulate the production, the fact that the secretions are coming out freely with drooling tend not to use it unless he has a cold and the secretions are thick. he is completely non oral, gastrostomy fed and has had this since he was 3mths old. he is currently on two forms of medication in an attempt to control the secretions a hyocine patch and glycoppyronium bromide neither are completely successful and we are still constantly changing bibs sometimes every half hour. we have 25 high absorbant special needs bibs they are much better than the general baby bibs we had 150 of those!! the next time we go to see the consultant iam going to ask about botox. hope this makes you feel a little better and that you are not the only one.

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hi, dont be lonely! i have a little boy he is four years old, he has very little suck/swallow reflex and has excessive secretions. we have suction but i believe this to stimulate the production, the fact that the secretions are coming out freely with drooling tend not to use it unless he has a cold and the secretions are thick. he is completely non oral, gastrostomy fed and has had this since he was 3mths old. he is currently on two forms of medication in an attempt to control the secretions a hyocine patch and glycoppyronium bromide neither are completely successful and we are still constantly changing bibs sometimes every half hour. we have 25 high absorbant special needs bibs they are much better than the general baby bibs we had 150 of those!! the next time we go to see the consultant iam going to ask about botox. hope this makes you feel a little better and that you are not the only one.
(This post was last modified: 02-04-2012 08:55 PM by lexie lamb.)

[chrissie]

Hi my son has bulbar palsy amongst his other issues and is fed viagastrostomy, jejunostomy and tpn.we suction secretions too.He has low muscle tone but has started to improve with lots of physio.don't feel lonely anymore

[Toots13]

Thanks for your replies- its really heartening to hear from other people. Do your children ever get stridor? This has hospitalised my daughter 6 times in 6 months as she has a small airway. Or do they suffer from chest infections? What support do you get from your borough to help you at home?
We do intensive physio with our daughter to increase her muscle tone, and there have been definite improvements.
Thanks again for your replies xxx

[lexie lamb]

[quote='Toots13' pid='34072' dateline='1328545638']
Thanks for your replies- its really heartening to hear from other people. Do your children ever get stridor? This has hospitalised my daughter 6 times in 6 months as she has a small airway. Or do they suffer from chest infections? What support do you get from your borough to help you at home?
We do intensive physio with our daughter to increase her muscle tone, and there have been definite improvements.
Thanks again for your replies xx
hi again, my son suffers repeat chest infections and was in hospital last week for 3 days, he aspirates his secretions (breathes them into his lungs) this causes the infection. he starts with mild recession (sunken chest) tug in the throat and noisy breathing like he is working harder than normal. i then check his sats we have a monitor and oxygen. if they are low we go to hospital were he has nebulisers and iv antibiotics. we are supported well by our community nurses however once i recognise these symptoms i trust and use my own instincts. Alex was in hospital every 6-8 weeks for the first two years of his life it has got better as he has built up strength and immunity.