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

Hope everyone had a good weekend
Good night all
X

Morning all.
I'm thinking about asking family fund to maybe help us out to go Disney land?
I told dm and she said that it's disgusting that I even thought of it because it's just for terminally ill kids.
X

Hi Isitme.......poor Ds. I hope the tests get to the bottom of the problem and theyt can sort it out asap. Is he feeling any better today?

Re family fund, they will probably give you Thomas Cook vouchers which you can put towards a hoiliday, either here or abroad. Can be used for Haven too. They don't fund Florida!! Make a Wish Foundation (www.make-a-wish.org.uk/fundraising/donate/?gclid=CMPThIfi17ACFY5pfAodECGczg) are the ones who usually take kids to Disney. Dreams Come True Charity (www.dctc.org.uk/) may fund to Disney Paris but not sure........worth checking them all out. You can apply to the Family fund each year ( check out their website www.familyfund.org.uk/) for various things. it is means tested though and amount of acceptable income is different depending on where you live.

Good luck

My only income is what I get in benefits.
I don't work ( because no one at home who can will look after ds and atm I'm not well either with kidney probs)

I get no support of family. My main paying out is buying food that he might eat and transport fees, nappies, wipes, clothes and then if I need anything.
So end of day nothing left god help me when I have bills to pay lol

Are there any awareness ribbons/ bracelets for tubies?
X

Sorry I didn't do the links properly

www.make-a-wish.org.uk/fundraising/donate/?gclid=CMPThIfi17ACFY5pfAodECGczg

www.dctc.org.uk/

www.familyfund.org.uk/

Thanks.

I've got a bit of a ?
(to me) when ever ds has milk in his diet he is constipated.
In the last few days hes had a lot more milk down his tube ( yoghurts and mixed with food) he's opened bowels after 3 days.
I've just gave him bog standard fruit down tube today.
He's Been in pain.

Also on his vest where his peg is it's collected discharge. He is on antibiotics. Can I send you the pic via email and will you let me know what you think.

2old how are you feeling now?
Tooloud is ds better? What about your Internet?
Everyone ok?
X

Thanks.

I've got a bit of a ?
(to me) when ever ds has milk in his diet he is constipated.
In the last few days hes had a lot more milk down his tube ( yoghurts and mixed with food) he's opened bowels after 3 days.
I've just gave him bog standard fruit down tube today.
He's Been in pain.

Also on his vest where his peg is it's collected discharge. He is on antibiotics. Can I send you the pic via email and will you let me know what you think.

2old how are you feeling now?
Tooloud is ds better? What about your Internet?
Everyone ok?
X

Isitme - please feel free to send the pic.

Do you know where in his tummy the pain is? Is it higher up in his tummy or lower down, or just at his peg site? Am thinking maybe wind. if he is intolerant to dairy that can cause a lot of trapped wind ( not sure about constipation but will check) and maybe the fibre in the fruit causing wind.

If new antibiotics that could be working up to a runny tummy, which can sometimes be painful......

if higher up in his tummy then maybe fruit is too acidic. With DS if his bowels are a bit slow, a 'drink' of pure orange and he goes within a few hours.

Poor wee sould is really going through it just now.

Sorry can't join in discussion but read your posts with interest. DS I don't
think it will ever happen but with DD who knows?
Good luck to you and all your tubies. xx

His pain has been on his side bit he has rubbed his peg site today too (gently).
I will email you the pic now.
He had pear today to help with constipation but it seems like there's still loads to come. Hes normally fine with a.bs so that's why I was guessing kidney pain?
The discharge on his vest is quite odd. It's a yuk colour with bits of red and like brown colour?
He sees his gastric on thurs and I will take pic along ( photo evidence helps a lot) and If Its same in the morning I will ring community nurses.
2 old how are you feeling?
How are the lo's?
X

Itsme : Got your pic. How does his stoma site look? Is it red/gunky?

That could be pus/blood, but could also be food leaking..........Does it smell....sorry, super gross but sometimes it helps.

If his site isn't looking great and this continues I'd want it checked and swabbed. If he is still crying and his temp is still up then could be a stoma infection. If you think it's that then I would probably phone NHS 24. If it is an infection, really needs the right antibiotics asap to be safe. What antibiotics is he on just now?

Hi everyone
Ds has temp of 37.5 ( it was 37.3 when he needed strong antibiotics for peg infection) I've rang community nurses they coming over. If they think he needs to be seen then I will make sure they speak to gp so we have no waiting. He's fine in every other way, he's playing and what not.

Peg site looked fine today
So will have to wait and see really
X

They are absolutely useless!
They came out swabbed and said here take it to your gp in the morning.
:|
Around the stoma there's skin on the bottom side which is White in colour and very hard. It's not granulation.
We will be seeing the gastrics on thurs so will let them know.
They were stuck up biatches pardon my French

Hope everyone is ok
It's rather quite round here these days
X

Hiya!! Sorry I was on a training course today and again tomorrow and I have a meeting on Thursday so prob won't be around much.

CCN sounds hopeless!! Maybe we are just lucky but ours will come at the drop of a hat, will take swabs, urine specimiens whatever straight to the hospital lab for us.....

Hope DS is ok. Can I be cheeky and ask what condition he has? I know you said his immune system is compromised. ( Please don't feel you need to answer - I'm just nosey and fascinated with everything medical since having DS, my own medical miracle)

Hugs xxx

She was very much up her own arse.

Ds:
-failure to thrive due to:
? severe reflux
? possible cmpi
? food aversion

Also:
-consitpation most of time very irregular

• slow gastric emptying
• immune system is very much down due to meningitis

He's being tested for
Kidney problems
Slow gastric emptying (already know)
Hearing problems
I think he may have a few mental problems due to everything he's been through. He's a very active child ( mother thinks hyper activity and ADHD)
Delayed speech.

Your lo?
X

If he's over stimulated he criesscreams
He hates new places and new people
He's fine in his comfort zone he's not one to get out there
X
He drew all over his White shoes today :| the pen lights up and it's got pooh bear in it!
X

Any one there??
Hope everything went good galli

2old are you ok??

I rang cmn and I said I was appalled at the fact I was left to take swabs upto gp.
They said it's policy

He keeps pulling at his peg.
I'm
Going to make sure his gastrics have a good look tomorrow!
X

Hope it goes well today Isitme1.

Your Community nurses don't sound very supportive at all.

2old is back after spending 3 nights in hospital 1 in HDU with DS5 with seizures (bloody meningitis) Now home both were due in respite DD went as arranged and are paed felt there was no reason why DS shouldn't join her So feeling very guilty I have let him go as I am Knackered.
How are you all, have not read recent posts but will do so later and stick my twopenneth in if I have anything worth saying!!
Isitme you are really going through the mill as I have said before meningitis is bloody evil. What type did your DS have
Love to all XXX

Ds had the meningitis with septecmia.
They don't want to do fundo yet as he's not strong enough.
According to last week he's lost about 400g but the consultant wasnt too bothered.
He thinks that the reflux will stop when he puts on weight.
But how can he put on weight if on peg feeds he's not thriving and bd is making him constipated and he is sick and he know food=pain.
He doesn't swallow much food so he isn't going to grow much.
He did say I was keeping his site well looked aftered :)

Yay
I did something right lol
How's ds doing now 2old? Make sure you do rest up proper!
X

Thanks Isitsme DS had pneumococcal meningitis and was found virtually dead by GF and also found birth mother off this planet having taken heroine and cocaine. I am beside myself with anger.Have never written this before, he is so beautiful and although nearly 14 still looks 9-10 he has an air of innocence
about him.
Enough enough of self pity I have a lot to do but have a w/e to recover. Mind you next problem is to sort out DD's fanny .
Love to you allxx

Aww bless. It's horrible when there's been suffering that we can't do much about.
My gran was a foster carer and she had a lot of kids with horrible past- sexually abused by family, birth mother drug addict during pregnancy etc.
cuddle from me

Have a nice time sorting dd out :P

I feel a rant coming on.
I was so optimistic about today's appointment and all he said was the ball is out of our court it's up to feeding therapists to get him to eat.
I said he is biting and spitting food. Not swallowing. I then reminded him that he said he would do the following:

• gastric emptying scan
• fundo ( atleast talk with surgeons)

And he said he doesn't need a gastric emptying scan ( yh because bring food up that's been there for over 10hours in normal ) and with the fundo ds needs to be a bit stronger and he doesn't think he needs it! Ds refluxes so many times a day it's unreal. He may only be sick a few times a week but silent reflux damages the food pipe so it's more dangerous! Wtf. I'm In a horrible mood for ds. Im starting ds on milk free tomorrow. It's not fair he has to suffer. He's sooo constipated! I was giving a lot of milky products down peg so I'm sure it's that! My poor baby has got to bloody suffer more. He needs either fundo or jpeg (in my opinion)

Can someone tell me if slow gastric emptying means no fundo so therefor jpeg?
I'm just so agitated for ds.
I know it's having an effect in him mentally.
Apart from his gastric, immunology prob and being unsociable he's just a little boy. He doesn't want this pain and I just feel helpless.
I'm going to email dietician this:

I am writing you this email to let you know that in my opinion ds is not thriving on the neocate advance and he also isn't eating orally.

We said we would try normal food to encourage him to eat. That has failed and he is disgustingly constipated. I will be starting him on a basic blended diet to help with his calorie intake. This will be dairy free. I would like your help to do so. I know the main danger is the tube blocking. I have been doing this for a few days (just basic fruit, veg and chicken) and I use a baby purée blender to make sure that there are no bits in it and then I use a tiny sieve to confirm the bits are out.
So far he's had via tube:
Strawberry
Avocado
Pears
Peaches
Chicken
Broccoli
And I've not had a problem.
I do know that there is a risk of the tube blocking and I'm doing all I can to prevent that.
I can't sit around and do nothing. He isn't eating anything bigger than a crumb, when he was younger feeding time was a challenge. I want this to be a relaxed and healthy way for him.

Thank you

Well what do you think?
X

Isitme : Sorry I haven't been on. Course was ok. Trainer was interesting.

Your poor DS. My DS has lots of 'stuff' wrong. Including lots of sensory processing issues similar to your DS. I can confirm that they can get better. He is still sensitive, struggles with new things and endings, but other things have gotten much better. He wouldn't used to do any arty type stuff and couldn't cope with mess of any kind. Now he loves making thngs and will be ok, but not happy, if he gets messy. :)

He has/had:

DORV, ASD, VSD and ductus arteriosis, repaired with open heart surgery at 4 weeks old. Heart is not sitting correctly in his body, it is in right are but turned on it's axis. Recently his heart rate has been VERY low ( , 60bpm) no idea why.

Low oxygen levens for 4 weeks pre heart surgery, so bound to be some damage to his brain.

Extra broncheal tube:

Exomphalos Major : His liver was inside his umbilical cord. Repaired when he was 3 yrs old, but thewn liver moved and his hepatic artery is all curled around on itself and his liver sits in his lower abdomen, in front of his bladder. Very risky as if he falls on something hard ( table edge etc) then he is at risk of severely damaging his liver and bleeding out :( Further surgery to relocate liver when 5 yrs old, on his birthday. Didn't move liver as discovered and internal hernia which was responsible for severe episodes of pain and ileus ( gut not working)

Malrotation of large and small intestine, dysmotility

GERD and loose gullet ( vomits very easily)

Cow's milk protein allergy, lactose intolerance, soya intlerance, lentil allergy, latex allergy, lanolin allergy

Paralytic ileus : Gut stops working completely when he is ill.

Completely tube fed (due to exaggerated gag reflex and weak swallow and oro motor dysfunction.

Pierre Robin Sequence: Cleft palate, small jaw. Cleft repair at 9mth and 6 years old

Complex, severe bilateral Talipes ( Clubfeet): Surgery at 18 months and 5 yrs old. Potentially further surgeries required and potentially amputation in future of left foot as surgery is only successfuly for a short time an dit returns to original positon.

Tibial Torsion : Again potential future surgery to correct this.

Hypotonia all over

Hypermobility syndrome : Causes lots of pain in joints if he does either too much or too little activity. He uses a wheelchair for distance and is a wobbly walker.

Dyspraxia

His imune system has improved drastically over the past year. Prior to this he picked up every single bug that was going both in hospital and out. Had MRSA, well actually VRSA as a baby too so need to be careful with that.....

Sensory Processing Disorder

Recurrent UTI,s and urinary frequency problems ( upt o 17 times a day)

Strong ADHA and ASD traits

Cognitively does well, but struggles with numbers, concepts etc

I think that's it, but I'm sure I've probably missed something.............I carry a complete list around with me in the car, just in case we have to go to hospital in a hurry because I'd never remember it all.

Oh and he wears glasses............

Apart fromt hat he is a fantastic, happy, life loving little boy who was described by someone who worked with him as 'sprinkling fairy dust everywhere he goes'

Now you're sorry you asked aren't you? Sorry.........

2old: Hope you are able to relax enough to get a rest and both DS and DD are ok.Exciting time adhead with DD......not I think. xx

Isitme : Try adding some milled flaxseed for constipation. You can buy it in Holland and Barrett and sometimes even in Asda. About 5 g in one feed works for DS ( but he has a weird gut)

My DS has slow gastric emptying and he doesn't have a fundo or a jpeg, so don't panic. I didn't see a real difference in my DS until I completely stopped giving him formula and started giving him'free water' ( water on it's own about and hour before food. Does your DS have any meds to help his slow motility> Domperidone etc? For my DS if we don't give him Domperidone he doesn't even digest water!!

Did you send your email? How was it received?

How is DS's pain today?

Am off to bed. Had planned on going much earlier but here I am........nighty night :) xx

Poor little man.
I didn't understand all of it but the bits I did understand were enough.

I sent the full post to the dietician.
Woops.
I did email back an apology lol.
She said that the tube itself won't become blocked but the bit inside will gather sediments and will become blocked over time.
That actually made sense to me.

So I will hold off until Tuesday and see what they say.
Salt coming too.
X