Discussion
Good Evening PH,
Since birth my brother has had severe learning and physical disabilities, he doesn't have a diagnosis, but its brain damage from being starved of oxygen at birth. He needs 24 hour care and can't do anything for himself. When he was younger he loved his food. If he knew pudding was ready he wouldn't eat the rest of the meal. Even to the point when he would stop when he heard the fridge open.
The last year or so things have taken a turn for the worse. He has stopped eating and it's a struggle to get him to eat anything. Even pudding type things which he used to love. Feeding him used to be the last 'normal' part of his life. He doesn't enjoy eating.
He is very underweight, and was recently ill and lost 2kg (lucky sod in a way!), he currently weighs 42.1kg and is 166cm tall, giving him a BMI of 15.2.
It was mentioned a while ago about tube feeding, something my parents weren't keen on as they've heard not brilliant things about it. Most of the children at his school are tube fed and there is always someone moaning of injections or how its been taken out by mistake.
Does anyone have any experience of tube feeding? If the doctors say my brother needs it, my parents won't stop it, we all want whats best for him, but want to try and get as much advice as possible on it all.
Thanks for any replies
.
Since birth my brother has had severe learning and physical disabilities, he doesn't have a diagnosis, but its brain damage from being starved of oxygen at birth. He needs 24 hour care and can't do anything for himself. When he was younger he loved his food. If he knew pudding was ready he wouldn't eat the rest of the meal. Even to the point when he would stop when he heard the fridge open.
The last year or so things have taken a turn for the worse. He has stopped eating and it's a struggle to get him to eat anything. Even pudding type things which he used to love. Feeding him used to be the last 'normal' part of his life. He doesn't enjoy eating.
He is very underweight, and was recently ill and lost 2kg (lucky sod in a way!), he currently weighs 42.1kg and is 166cm tall, giving him a BMI of 15.2.
It was mentioned a while ago about tube feeding, something my parents weren't keen on as they've heard not brilliant things about it. Most of the children at his school are tube fed and there is always someone moaning of injections or how its been taken out by mistake.
Does anyone have any experience of tube feeding? If the doctors say my brother needs it, my parents won't stop it, we all want whats best for him, but want to try and get as much advice as possible on it all.
Thanks for any replies
.Shaw Tarse said:
Sounds like it, basically a tube plumbed in.
Then (probably overnight) attach it to a pump that will feed a liquid containing nutrients.
Sounds familiar from what I've heard parents doing. Do you also get fed (if thats the right word?) during the day as well? Sure I've seen some of the kids at his school with something going on at lunch time.Then (probably overnight) attach it to a pump that will feed a liquid containing nutrients.
Asked my other half who is a nurse about this. She's written the rest of this post
Hi
As alarming as tube feeing may seem, I would agree that this is the way forward. Once you have been shown how they work, they really are very easy to use and there is generally a good support system available from the company who provides the feed/pump and other nurses. He probably would have a tube go into his tummy and have the feed that way.
His BMI is currently too low and weight must be gained. If he is not eating, I am really not sure if there is another alternative. The tube feeding is very common & he should be able to get on with his daily life without it getting in the way.
As another point, I presume it has been investigated as to why he's now not eating? I'm sure this had probably been looked into, but obviously something has changed. I'm guessing you have had input from a dietician and SALT (speech & language therapist) to assess his swallow?
Hope all goes well for your brother!
Hi
As alarming as tube feeing may seem, I would agree that this is the way forward. Once you have been shown how they work, they really are very easy to use and there is generally a good support system available from the company who provides the feed/pump and other nurses. He probably would have a tube go into his tummy and have the feed that way.
His BMI is currently too low and weight must be gained. If he is not eating, I am really not sure if there is another alternative. The tube feeding is very common & he should be able to get on with his daily life without it getting in the way.
As another point, I presume it has been investigated as to why he's now not eating? I'm sure this had probably been looked into, but obviously something has changed. I'm guessing you have had input from a dietician and SALT (speech & language therapist) to assess his swallow?
Hope all goes well for your brother!
Hi OP
First thing, in case it is useful, is that a brain injury from being oxygen deprived is called hypoxic ischaemic encephalopathy - HIE. I'm in quite a good FB group for parents whose kids had it - the little girl I'm trying to adopt is now almost 2 and a half. The second thing is that a severe physical disability resulting from this is almost (99.9%) certainly cerebral palsy.
Having a tube that goes straight to your stomach through the stomach wall is called a gastrostomy, it's the G in PEG. Both my daughter and I have gastrostomy tubes - her because her cerebral palsy is so severe that she has never been able to swallow anything at all and me because my swallow mechanism is juuuust ballsed up enough that getting enough fluid in became unreasonably difficult 6 years ago - I can and do eat and drink orally, by mouth, just need that backup and on better days use it almost not at all.
It's not unusual for kids to hit puberty and not be able to eat enough to keep up with the growth spurts etc - result being getting very skinny and very tired and not having the energy to eat much - if your bro still has a 'safe swallow' (nothing goes down the wrong way) then having a gastrostomy tube placed won't take it away - what sometimes happens, and it's awesome when it does, is that the extra calories via feeding tube give the person enough energy to start enjoying eating by mouth again and just use their tube for top-ups to what they manage.
Some people find that they either don't get on with the special formula milks provided for tube fed people, or they don't like what's in them (it's not exactly good quality fresh food), and make their own instead - this requires either a high-speed kitchen blender, or a not-so-fancy one and a sieve, and it lets people have what they'd have eaten anyway just blitzed up and pushed down the tube with a syringe.
A guy with a gastrostomy tube wrote this book, you/your family may well find it useful. http://www.amazon.co.uk/Complete-Tubefeeding-Every...
Gotta run now but hope the above helps.
First thing, in case it is useful, is that a brain injury from being oxygen deprived is called hypoxic ischaemic encephalopathy - HIE. I'm in quite a good FB group for parents whose kids had it - the little girl I'm trying to adopt is now almost 2 and a half. The second thing is that a severe physical disability resulting from this is almost (99.9%) certainly cerebral palsy.
Having a tube that goes straight to your stomach through the stomach wall is called a gastrostomy, it's the G in PEG. Both my daughter and I have gastrostomy tubes - her because her cerebral palsy is so severe that she has never been able to swallow anything at all and me because my swallow mechanism is juuuust ballsed up enough that getting enough fluid in became unreasonably difficult 6 years ago - I can and do eat and drink orally, by mouth, just need that backup and on better days use it almost not at all.
It's not unusual for kids to hit puberty and not be able to eat enough to keep up with the growth spurts etc - result being getting very skinny and very tired and not having the energy to eat much - if your bro still has a 'safe swallow' (nothing goes down the wrong way) then having a gastrostomy tube placed won't take it away - what sometimes happens, and it's awesome when it does, is that the extra calories via feeding tube give the person enough energy to start enjoying eating by mouth again and just use their tube for top-ups to what they manage.
Some people find that they either don't get on with the special formula milks provided for tube fed people, or they don't like what's in them (it's not exactly good quality fresh food), and make their own instead - this requires either a high-speed kitchen blender, or a not-so-fancy one and a sieve, and it lets people have what they'd have eaten anyway just blitzed up and pushed down the tube with a syringe.
A guy with a gastrostomy tube wrote this book, you/your family may well find it useful. http://www.amazon.co.uk/Complete-Tubefeeding-Every...
Gotta run now but hope the above helps.
j4ckos mate said:
My mil was on it for ten years,
four or five nights a week,
infection is hard to control, but it did keep her going
TPN/being fed intravenously is wonderful when the digestive system cannot be used at all, near miraculous - but that's the only time it's appropriate, it's not an equivalent to tube feeding at all and has very serious problems associated with long-term use. four or five nights a week,
infection is hard to control, but it did keep her going
If someone's problem is with their swallow or their stomach, they 'only' need a regular feeding tube (either the up nostril or through stomach wall variety) - TPN is when the gut has lost the capacity to absorb nutrition, or has been removed, or in the case of a very tiny prem baby (we're talking 1 or 2lb) hasn't matured enough yet to do any digesting.
Thanks for all the replies, JJ55 please pass my thanks on to your other half for me.
He has seen someone from SALT a few times, he has also had x-rays to check his swallow (had to drink something that they could track down his throat etc).
The school he is at are fantastic, they keep a check on things. The doctors have said tube feeding is something we have to have in the back of our minds.
Its been useful to hear that its not all bad news and they are quite easy to look after. On the plus side we won't have to worry about him sneezing with a mouthful of food!
He has seen someone from SALT a few times, he has also had x-rays to check his swallow (had to drink something that they could track down his throat etc).
The school he is at are fantastic, they keep a check on things. The doctors have said tube feeding is something we have to have in the back of our minds.
Its been useful to hear that its not all bad news and they are quite easy to look after. On the plus side we won't have to worry about him sneezing with a mouthful of food!
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