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!
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Hi all. We saw ds's general medical paed yesterday. He's been anaemic, last time we went we were told to continue the iron for three months and then stop it. That was a month ago, he's been retested and his levels are still fine, ]so no more iron meds!!
next review is in 6 months. In the meantime he is to have an ultrasound of his kidneys as he had kidney/bladder stones (first dx when he was 3, last op to remove bladder ones when he was 6) and they re-scan every couple of years to make sure no more have formed. So a good appointment!

That's brilliant that he's no longer anaemic. One less med to give!
I'm glad everything going good for you and your ds.
Hope everyone has an easy night.

Hope 'the storm of 50 years' doesn't effect us all too much.
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Night all x

Morning all.
Just a quick one.
Good luck 2old! (we know you'll do brill)
Hope everyone slept well and all lo's are well too
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2old hope your meeting goes well. Not too good weight wise for your LOs by the sound of it. Tees me off that with all the other issues nothing else is straightforward - teeth, weight, CP, sleep, speech but then DGS has reasonable general health, hearing, sight, cognition and he's here! So you have to make the most of the good times and stay positive.

Isitme. Your poor DS as if it's not enough with the reflux and the eating. I guess you have to go with the GP but to get an open invite to a ward would be ideal.

At 6 months DGS had an Hb of 6.2 and looked transparent. That's the only thing that I am angry about that he shoud have been put on iron straight away, as am sure the hundreds of vacant episodes he had for several months were triggered by the anaemia (they said not but stopped when his Hb came up). That was so scary for us and took our attention away from helping him develop physically.

I bet it was scary.
I think it's just being lucky enough to see a doctor whom both cares and had the knowledge that's needed in lo's case.
His general paed was soooo p'd off that the services we needed werent offered to us in the north west best childrens hospital. We are still waiting to be seen by their gastrics- 6months on waiting list, 2 referrals and no reply as of yet.
We go to Sheffield children's hosp to see Europes leading gastric consultant.
Sometimes it takes us 2 hours to get there but it's worth it.

I didn't see gp I just dropped his urine off and told receptionist that ds is still ill. This morning he had his head on the sofa and he was screaming and shaking in pain :(
Gp should ring us soon. Hes Got low grade temp so that's not much to worry about it's the pain and family history that's the worry.

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Where's everyone gone?
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iPad 1% battery so off to watch football! Xx

Chat Soon
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2old how did you get on?
Tooloud how's ds?

Hope everyone ok.
Seems like Its me and mama here,.
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Good Mornong ladies :). SOme sympathy please for me. I agreed to do a 5k walk for BHF and it's today. And it is absolutely POURING!!!!!. Never mind, it's all in a good cause.

Hope you are all doing something nice today ( and warm :) )

Bhf?
Good luck. I had a very long walk yesterday- 2hours! In the rain but it was worth it.
Galli I need you help please.
We are seeing his gastrics on Thursday and he wanted ds on 'more normal milk' to encourage oral feeding but he's on neocate with a normal diet. Firstly have to tell him about bd and secondly am I actually doing ds any good if it's taking him ages to digest it? I don't want him to turn around and say I'm doing more harm than good.
He's a very 'high/upthere' guy and intimidates ( I've said that word so many times now it doesn't sound right lol)
I forget what to say! I started writing a list for when I see him but to me that just makes me look more young stupid I think he sees me as a young mother who can't cope I've had a lot to cope with I asked if it wad ds bowels Playing up as he's very irregular and he totally dismissed me
He is very good in his field and a nice guy too but I need him to take me seriously. How can that be achieved?
Morning to everyone and
Sorry for the long post
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Hi all.
2old is feeling her age today but am seeing endocriologist Monday and as all old nurses have self diagnosed tut tut.
Isitme we too had a gostroenterologist who was really up his own arse. When I took DS4 (now sadly dead) to see him about his diarrhoea he looked very very bored disbelieving and disinterested. I looked down on the floor under Stef's wheelchair was a rapidly expanding green liquid puddle of poo Dr jumped up screeching like a banshee and flapping his arms up and down shouting "get a cleaner get a cleaner". Everyone else was in hysterics 1hr later our relationship was on a different level. Any way you could arrange this
Galli good luck with the run we have a shop with a BHF tin so will chuck a few sheckels in for you.
Meeting went OK our NHS trust is trying to set up health passports for children with complex health needs but bloody confidentiality gets in the way.
Does anyone elses trust use them? DS's all seem OK at present. DD2 went to Sandringham on Tuesday too meet HM. Is now watching Trouping of the Colour Grr.
Might take a stroll along the prom

Think ? British heart foundation, maybe?

Good luck gallivants hope it stops raining, but looks very cloudy everywhere.

Isitme. It's horrible going to appointments and not being listened too. DD refused for ages to go to the MDT meetings as it was all doom and gloom despite all the efforts we were making. Makes you feel like a failure if you can't feed your child. Take a list and explain about the blended food. Also about DSs slow bowels and try to explain your concerns. I think BD is the right thing to establish normal feeding, having pre digested feeds may be encourages the bowel to be slow, after all the body is not designed for these feeds so is not behaving normally?

Dd and her DH back from holiday today, so I won't have much time to play around on the Internet any more. Back to the physio plan on Monday. Don't mind, enjoy seeing DGS improve, even if it is slow. Will keep an eye on here as have learned some good tips

Ooooohhh bhf I get it :)

Ds is either really constipated or is very loose.
I've actually forgot what normal looks like now lol.

His gastric took us serious at first but after our time in hospital a nurse kept pushing for me to feed him her way and I was doing it my way and the way salt said- tv fir distraction and small pieces in front of him. The silly bitch person said put the full plate in front of him and turn the tv off. As you can guess he stopped eating.
Grrrrr she the put in his notes that I WAS NOT FEEDING HIM! So from there that cow has destroyed all the work I did.
I put a complain in against her and on our next visit she didn't interfere.

Hope you feel better younger soon 2old.
I'm knackered at my age so your doing brilliantly!
I do admire you lots so smile please

S.mama enjoy having dgs around again! And don't forget to come and say hi and let us know how he's doing
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Galli hope the run went well. It's windy here but not much rain
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Tooloud hows ds?
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Thanks Isitme sure I will be on top form soon.Just need my useless parathyroid gland sorted out====no not useless I am sure thet have ADHD

Sorry warped humour

Well either way hope you feel better soon
don't get the joke lol
Atm very p'd off.
Family keep putting ds down.
My eye sight Is very weak. I had glasses from when I was younger but only because I like them lol.

? For those On dla- I'm not driving and as far as I'm aware they pay for a car? And I pay for driving lessons?
I can't do 2 hours in the rain again.
I had no cash on me for taxi
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DGS gets DLA and MOBILITY at the high rate. They did get a car when he turned 3 instead of the money. I would apply for DLA if you are not getting it because the PEG feeding is certainly not the norm. Not sure about the mobility side, as this relates to walking and I think from the age of 3?

Been to see DD and family just got back and had a lovely week only 1 day of rain. Lovely for them all to have a week of doing just family stuff. Batteries recharged I hope. Mine are

Isitme re attempt at poor joke parathyroids do their own thing have melt downs-oh I give up
As you don't drive even if you don't get High mobility The Roundtrees Trust will help fund driving lessons unless you are stonking rich. I don't think they have changed their criteria.

Stinking rich? Lol
I'm a single mother living with parents. Dh still not here :(
Not exactly the high life.

I will google that thank you very much.
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Well thought I'd let everyone know what he's been having via tube:
Breakfast- oat and apple cereal (baby powder type)
Dinner- lamb and potato (from homemade curry) with bread and butter.

Tea- I've decided that he will get a 'light tea' so he had yoghurt via tube. I've decided on light as he gets tummy ache at night with food still in his tummy.

Tomorrows breakfast:
Fresh strawberrys and apples with milk (and either bread if baby cereal )
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Galli how was today?
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Isitme ....you seem to be getting the hang of BD feeding! Well done, sounds a much better idea than milk feeds. Is it possible that DSs problem with slow moving bowels is due to his system never being properly working with lots of liqiid feeds.? Not sure if the bowel needs normal food to go through it to learn how to properly process food, just a thought as if so his bowel will eventually move more normally with your BD. always hope for the future x

:)
Yup I'm getting there.
He's always had probs with bowels. Even on normal feeds and food (before reflux became sooo bad) there was about 2 months of very good eating.

Poor little man keeps rubbing his side :( taking him to the hospital in a bit as he's not really responding to the antibiotics.

Hope everyone+lo's are all good
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Isitme: How did it go at the hospital. Hope you're home and DS is ok.

Well the walk yesterday was halved due to poor turnout ( wimps) and the weather......went well DS walkd a lot of the way and just got inot pushchair for wee rests every so often. Usually uses a wheelchair but decided pushchair was better in the weather.

Re DLA, DS gets high rate for Care and for mobility. If your LO is tube fed, overnight then you should be entitled to high rate care ( if you word your form right). As for mobility he needs ot to be able to walk at all to get it at 3yrs. At 5 you can get it if mobility is limited. DS had really bad club feet, hypotonia and hypermobility syndrome which is why he gets it. We opted for the car instead of the ££ and it is fantastic.

Have you heard of the Family Fund?They are great, recently funded a laptop for my DS to use in school. Thet can fund washing machines, holidays, special toys for kids, bedding because of spoiling due to feed leaking etc. I know they sometimes fund driving lessons too. Worth checking out.

Hope everyone else has had a good weekend. :)

Just got home about an hour ago
They took blood and urine.
Both are fine so we are baffled to why he is like this.
I mentioned my kidney reflux as a child which has led to me getting recurrent kidney infections. So they want to see him on Friday to discuss this further maybe start tests like ultra sounds and what not.

God I'm knackered.
Ds isn't tolerating pump feed for this feed (night one) he's very uncomfortable so I've stopped it. The only food he's had is this mornings yummy breakfast and a bit of quaver and a few nibbles of my pizza. Better than nothing I suppose.
They have punctured ds 8 times for blood! But I knew it was needed so had to grin and bear it really.
He's Been such a good boy for me :)
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