balloon retained gastrostomy tube child 13 months

omen666

Does anyone here have any experience of their child having one of these to feed the child direct into their stomach or a PEG tube?

He has had to have this due to reflux isssues and food going through his mouth into his lungs and causing infections in his lungs and pneumonia. He is no longer allowed to have his lungs cleaned out as this will have an adverse effect on his later life and his lung capability

I was wondering if you had claimed the DLA (Care Element) from the DWP.

If so what a nigthmare these forms are and could you give us an idea of what level of care allowance you got? Low/Med/High? It is taking weeks and we are still awaiting a decision and are trying to find out whats what. We have only gone for the care element.

Thanks in advance

Torry_Quine

I don't have an answer for you but just to let you know that it is a very successful way of getting nutrition. My elderly MIL has had a peg feeding tube for over five years after suffering aspiration pneumonia caused by previous problems. She has thrived on it and other than needing the tube changed from time to time needs little maintenance.

kingfisherblue

My son has severe reflux due to medical conditions that he was born with. He can't have a tube as he has had so much internal surgery, but I found support from TOFS to be invaluable. This organisation deals with children who are born with tracheo-oesophageal fistula and oesophageal atresia (just two of the conditions that my son was born with), but I'm sure they will help you. They can put you in touch with other parents who have experience of tube feeding. They can also put you in touch with parents whose children have reflux.

www.tofs.org.uk

My son has had reflex since he was a few months old. A couple of tips that might help - prop the top end of your son's cot with bricks, or put a pillow under the top end of his mattress. If food dribbles out of his mouth when you are feeding him, encourage him to sit back slightly, and tilt his chin upwards a little. Don't lie him down within twenty minutes of feeding him. And keep plenty of old towels close by - you sound as though you need them!

My son is now twelve and has been on several medications for reflux for a number of years. It isn't cured, but we manage it better. Having a cold makes it worse, so he also takes a medicine that thins down the phlegm.

My child has always received high rate care, but he does have other disabilities as well. You can't get high rate mobility until he is three years old, and low rate mobility until he is five.

You might want to contact the Family Fund (if total income is less than £25,000) to apply for a grant. This can be used towards a washing machine or tumble dryer or a variety of other items. They will assess your child and make their decision after this. It's about a four month wait.

https://www.familyfund.org.uk

omen666

Torry_Quine wrote: »

I don't have an answer for you but just to let you know that it is a very successful way of getting nutrition. My elderly MIL has had a peg feeding tube for over five years after suffering aspiration pneumonia caused by previous problems. She has thrived on it and other than needing the tube changed from time to time needs little maintenance.

That is exactly what he has. It is not my child but my nephew and he has had 3 ops now, loads of MRI scans and all sorts been a very labourious situation especially considering our local PCT have done nothing and we got him referred to Addenbrookes and they took it all on board and started sorting it straight away realising the seriousness.

Thanks for your help

kingfisherblue wrote: »

My son has severe reflux due to medical conditions that he was born with. He can't have a tube as he has had so much internal surgery, but I found support from TOFS to be invaluable. This organisation deals with children who are born with tracheo-oesophageal fistula and oesophageal atresia (just two of the conditions that my son was born with), but I'm sure they will help you. They can put you in touch with other parents who have experience of tube feeding. They can also put you in touch with parents whose children have reflux.

www.tofs.org.uk

My son has had reflex since he was a few months old. A couple of tips that might help - prop the top end of your son's cot with bricks, or put a pillow under the top end of his mattress. If food dribbles out of his mouth when you are feeding him, encourage him to sit back slightly, and tilt his chin upwards a little. Don't lie him down within twenty minutes of feeding him. And keep plenty of old towels close by - you sound as though you need them!

My son is now twelve and has been on several medications for reflux for a number of years. It isn't cured, but we manage it better. Having a cold makes it worse, so he also takes a medicine that thins down the phlegm.

My child has always received high rate care, but he does have other disabilities as well. You can't get high rate mobility until he is three years old, and low rate mobility until he is five.

You might want to contact the Family Fund (if total income is less than £25,000) to apply for a grant. This can be used towards a washing machine or tumble dryer or a variety of other items. They will assess your child and make their decision after this. It's about a four month wait.

www.familyfund.org.uk

Thanks very much for both of those contacts it is so appreciated!!

omen666

I should also add

He has developmental issues as well and is having genetics done, they are unsure as to whether his condition has prevented his development.
He is 13 months but as yet has no teeth, does not walk or crawl nor talk. He is what they called a floppy baby and is having Physio regularly.

Mandymull

my 16 year old daughter had a PEG and now has a Mick -key button fitted....she does get HRC and HRM but the entral feeding is only a small part of her disabilty....so not sure if having a peg would be enough to claim care on that basis alone
Mandy

Indie_Kid

omen666 wrote: »

He is 13 months but as yet has no teeth, does not walk or crawl nor talk. He is what they called a floppy baby and is having Physio regularly.

Not all babies walk or talk at that age. Some can stand; but can't quite take steps yet.

merlin68

Has he been tested for di george syndrome, as this is what my dd has, and was exactly the same at birth. She got high rate care for the same issues.

stompin-sarah

my sister has heart problems and she had the gastrostomy for quite a few years and my mum got high rate care and high rate mobility for her HTH

jennie-jack

both of my children have pegs and they both receive high rate care.

we didnt get on with the ballooned button so they have the original peg tube still btu it works well. they both had severe reflux and had it surgically repaired.

www.livingwithreflux.org was helpful for us from a reflux and tube point of view.

our is underlined by a connective tissue disorder which causes floppyness of muscles and things this making my daughter aspirate often.

it is also something that i do. i have thickened liquids to avoid pneumonia. it is rubbish but we manage.

our community nurse helped us with dla forms for this.

omen666

jennie-jack wrote: »

both of my children have pegs and they both receive high rate care.

we didnt get on with the ballooned button so they have the original peg tube still btu it works well. they both had severe reflux and had it surgically repaired.

www.livingwithreflux.org was helpful for us from a reflux and tube point of view.

our is underlined by a connective tissue disorder which causes floppyness of muscles and things this making my daughter aspirate often.

it is also something that i do. i have thickened liquids to avoid pneumonia. it is rubbish but we manage.

our community nurse helped us with dla forms for this.

Thanks for this sounds a carbon copy of my nephew. Thanks for tyhe link.

Did you geta definitive diagnosis? We still havent had one as such and are now awaiting genetcis although he dhas been screened for Prada Willy and Fragile X and he has neither.

The medical consultants are unsure whay and he also had his osephegus tied to prevent reflux too in the same OP.