Gastrostomy/ tube feeding support group...

[Isitme1]

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
X

Isitme- yes, I might try that. The stand makes such a crashing sound in the middle of the night. He is a little imp!

Bless him. Ds pump has just finished and I've got rid of the spider in a nice way lol. Oo if I see another one I will scream!!!!
Bloody hate them.
Can I ask how old is your ds?
X
I bet it does make a loud sound. We use the pump 3x a day and once at night.
X

He is 2. He only needs the pump feed at night now (12 hours) . At last he is getting some calories from real food during the day now!

Nine my ds is 2in about 2weeks.
Did that work then?

How is everyone?
Been a pretty mad day or 2.

Dh still in a mood
Ds not eating
Or pooing [seen as he's already constipated I supposed he won't want to eat]
I'm tired and feel pretty lonely but it's tough. We just have to get on with it.

Hope everyone is doing good

X

Hi all and welcome Ninepeedles hope we can offer you a little support and vice-versa.I understand your DS has a tracheotomy, it is so nice that they are allowed home now ,bet sneezecakesmum can remember when they were hospitalised for ever

Grandaughter you had better tell your DH to buck his ideas up or else he will have me to answer to How is my DGGS Did I misunderstand and you are going to get your own home if so congratulations (I am senile you know)
All very quiet here as scallywags are in respite but all hell will break out tomorrow as they are home, but it will be nice to have them home, Meant to tackle garden but couldn't be a*d. Took the others to the end of pier show

Hope every one is well and have enjoyed the bank holiday xx

Its one of options we have.
Let's see What happens.

Your dggs is constipated.
Nothing seems to really help. Taking him to gp tomorrow to get him sorted.

Think I'm coming down with depression again,
The last time it started with being scared of dying and what would happen to ds and that's happening again. Especially when I'm by myself.
Mind plays a lot of tricks on us.

Granny hope you get some rest before dc come back

X

Sorry about DGGS and his constipation DS also suffers from this but it doesn't bother him and I give him regular Movicol plus suppositories if necessary. What milk is he on? DS is on Peptisorb same as Peptim which has no fibre.

Re depression PLEASE mention it to your GP, I can understand your fear of dying we all are scared of this especially if DC's have SN Do you get any proper professional support. I am so lucky my 2 get Continuing Health Care Plans.
Please PM me if you need to talk XXXXX

Gp will put me back on the ads again and it's not what I want, I know once dh is here it will be better as I don't have to worry about him alone. I will have someone to talk to about him without them saying. I suppose I feel bad as he's not talking to me at all too. Not even picking the phone up.
I've emailed him ds pics
And told him that ds isn't well so needs to go see gp. Let's see if he picks up tomorrow

Thank you very much x

Please stay strong
Will speak tomorrow

Hallo. Dd just admitted to hospital for a NG tube. Severe silent reflux, bottle aversion, solids aversion, drinks 10oz on a good day. Am waiting outside her room while a nurse tries to feed her to observe how she feeds. All I can hear umps screaming

Willow. That all sounds so much like ds. Apart from he didn't get much help from anyone apart from me and then gastrics at 18months, I do hope you have received help sooner than that and I can promise that the food aversions becomes easier with time. What ever you do do not force her to eat anything. Just offer small amounts of bland food at first. Ds won't eat nothing but ringo crisp atm but its something at least.
The tube feeding will make it easier for you and her, she will be getting all her nutrients and you won't be worried as much.
Is she doom any meds for the reflux. That is exactly what is going on with ds.
Ask for ph probe to be done.

X

Granny I feel better than last night. That seems to happen mainly at night so the days arent as bad. Woke up with a headache today :(
Hope your ok and hope the dc are too
X

Hello again and thanks for the nice welcome. Haven't tried the rucksack yet. I am pretty sure the pump has to be a certain height above his button, and I am frightened to fix the rucksack to anything in case he strangles himself!

Sorry to hear you are feeling so low, isitme, I hope things pick up for you soon.
Can you give extra cooled boiled water bolus to ease the constipation? This helps my wee one when things get bunged up!

Willow, ds started with an ng tube and when he got his fundoplication and mic-key button, he had a total aversion to anything near his mouth. Nothing could pass his lips, including a toothbrush. He was totally tube fed. Fast forward 16 months and he has made such a lot of progress! It has taken a lot of patience but he now only has a tube feed overnight, and is eating real food during the day. We found strong flavoured things worked best.
At least with the tube feed you don't need to worry about him getting what he needs.

It is nice to chat with folk who have similar challenges!

Hi Eveyone:

Isitme: Huge hugs for you. xxxx Hope things look brighter soon.

Welcome to Willow and Peedles (am liking that name :) )

Peedles: What pump are you using. We have used loads of different pump s and I know that some should ideally be placed at a certain height for optimum delivery, but tbh it has never really affectred the flow of the feed. What has affected delivery of the feed is the temp of the feed and the air. The colder it is the faster it goes ...... I wouldn't worry too much about it being exactly the right height. If you do move it and it slows down or speeds up slightly then adjust the rate accordingly to even it out.

Won't be around tomorrow. DS had a cardiology appointment to hopefully get to the bottom of his very ow heart rate of recent times and then we are off out for dinner cos it's my birthday ( 40....eeeeek!)

Will pop in on Thursday evening to see how everyone is. Am participating in a consultation on the Children and Young People's Bill on Thursday in the day time - in relation to foster care, so that should be interesting.

Hope you all have a settled and health few days.

Isitme .....more hugs. xx

Galivants, it is an Abbott freego pump. He uses a Farrell valve with it, which might affect things? I am going to have to read up Internet instructions as the leaflet got soaked during a nighttime feed leak. (That was a fun night!)
Happy 40th! Hope you have a lovely time.

Hi to all the oldies and all the newbies. I'm back but have sweet fanny adams to add to the conversation (as usual ) as I dont know much about buttons at all!

Hope things settle a little isitme. You seem to have too much hassle in your life at the moment. I'm all for boredom personally.

I think pumps dont need to be above the level of the button though as its a pump so cant backflow??? I'd experiment peedles if I was you!!! Though not attached to the DC (forgot to say that )

sneezecakesmum I am sure you have something to say----us oldies always do
How is your DD try not to worry too much.
I agree with Galli it doesn't seem to matter what height the pump is, this afternoon DS was in P Pod chair and the pump was in feed bag on floor---he is fed 23-24/hrs a day,no probs. Maybe a pump malfunction.

Dear grandaughter hope you are feeling a bit better and you have been to your GP nights are always the worst when you are on your own. Hope your DH has answered your calls. Love to my DGGS and you ofcourse.

HAPPY BIRTHDAY GALLI bunch of for you.

Scallywags home from respite happy and full of beans. DS 's birth mum kicking off am sure she does not realise how disabled he is. Have been asked to write letter giving her the full facts. She did not give permi
sion for his adoption as she was a guest of HM, still feel sad for her. Thinking of travelling North to let her see him. SORRY not the right place to post this,
hope you understand.
Sleep well all hopefully

happy birthday gali I hope little gali gives you the worlds biggest cuddle. They are the best present us mothers can ask for and a box of choc with some flowers

I've just noticed ds pump is on the floor and he is on the bed so it's lower than him. I don't remember being told it had to be same height or above, I think that's just bogus feeds.

Granny nope. Hes not answered any calls at all. I promised I wouldn't get ds involved so I send him emails everyday with his pics. I think it was quiet childish how I did tell him ds was at the drs today and I thought he would txt/email or pick up to see how is he doing. But nope.

Ah well.
Not such a bad night tonight. Still feel a bit poo but I had a good kick off with gp and a good shopping trip :)
I said to gp I bought ds here EvERY WEEK sometimes twice a week as he wasn't eating and was losing weight. His reply o your depressed or o give him baby food (even though I told him he was scared of a spoon) or o 2oz of milk all day is fine he said don't blame this on me. I said you could of helped more. He said o it's not my field and he should of got referred to gosh.

Gali I've got a few letters to write over the next week or so. Once they are done will you check them for me please :)

great aunt sneeze I hope every thing went well for you

X

Granny don't worry about the silly cow of a mum.
Were here no matter what the topic is
If you want to pm feel free to do so
X

agreeing with sneezecakes that pumps, well, pump so I don't think height above the button matters - at least not with ds's pump We often run a feed through with his pump stand on the floor!! Actually the school nurses do too, and they are sticklers for doing things by the book

Hallo again

waves at Peedles

Tube going in this afternoon. Desperately trying to convince ped to allow us home next week with no tube but ultra fortified hi cal formula instead (god knows how - add oil?)

We've abandoned the Neocate as it is just vile and I could not drink it let alone sensitive nosed baby. Will wait to see if there is a true CMPI as neocate didn't help a bit.

Dreading tube fitting. Will have to go out for a walk or something.

Willow it's not as bad as it seems. It's soooo much better than fighting to get calories in.
Think of it like this
If the paed didn't think it needed to be done it wouldn't be done.
If it means your dc gets more cals,water and nutrients then what's the problem?
I know it's daunting but it helps.
I was alone and I had to cope alone, nearly 3hours away from home and I coped.
The first thing that went down was diarolyte and that was 15oz over 15hours. He tolerated it. I was that amazed that I was nearly crying. He would struggle to have that amount of water over A week.

It will help your dc put weight and look healthy

Hope that helps
Try not to worry too much

X

Ophelia there are things they can prescribe to add to baby formula to make it higher in calories. Ds had maxijul and calogen - maxijul is a powder and calogen a refined fat - he always had the two together; the Dietitian told me that one of them can cause problems if it is prescribed on its own but I cant remember which one it was!

willow Please be reassured that all will be well. Your dd will get what she needs to thrive and in the long run you will feel much less stress!
How old is your dd?
My ds use to be on neocate, and I agree it is vile! But it doesn't make any difference if it bypasses mouth/nose. They will find the formula which is just right for your dd.
Hugs to you for today. All will be well.