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

Had a horrible evening
Ds looked like he had something in his mouth but I can't quite put my finger on it. I tried to 'take it out' but I don't know if it was plastic ( can't see where that would of come from) or extra growth on his gum on the inside near the cheek. Hes been biting a lot recently and it's making a horrible teeth grinding sound.
He was then sick. Chocked. And stopped breathing.
It was horrible. His eyes became fixed.
He was fine after I let all of his tummy contents.
He his in bed with 2 baby monitors on- baby breathing angel care one and video monitor.
It was horrible.
I'm going to email his consultant now to let them know.
X

Oh no. How scary for you. There weren't any foreign ( plastic) objects in his vomit? Poor wee man. Is that the first time he's done the fixing of his eyes thing?

Hope you get a quick answer. Higs and everything crossed for a peaceful, but safe night. xx

Isitme how awful for you I think you coped brilliantly well done. Hope the little chap is ok and you have a reasonable night.
Galli and Star you have reminded me, used to do a pumping action with DS4's Hickman line if it was a bit stiff, unlike stupid Dr who used a 2ml syringe and split the tube!

I couldn't see any foreign objects. If there was anything there it would of come out with his sick. I've emailed the consultant.
If anything else happens will take him to a+e. He's still refluxing but he's trying to sleep through it.
I've put pump on extra slow. He seems settled.

It's not the first time he's done it. It's 4th-5th maybe.
It's horrible when that happend. I just cuddled him and rubbed his chest. It wasnt as long as the first times it's happened.
When I told dm I was almost crying.
Don't think I'll get much sleep tonight. He's got hearing test tomorrow too.
Starfish I don't really understand what you mean...
X

Rather than a long smooth push, you push, stop, push, stop but the stops are hardly noticeable.... not sure that;s any lcearer tbh, sorry.

Hope all is well for you now and your DS has a peaceful night. Might be worth propping his bed up a bit higher if you can. May help his reflux a bit. Just folding up a blanket and putting it under the head end of his matress may be enough...

My Ds sleeps amost sitting up. Any lower and he refluxes terribly.

XXX

Thanks galli.
I'm looking into the reflux bed from america. The comfy lift one.
Its $500 I think.
I've sent off for a form to see if I can get some funding into it via family fund.
It actually looks like it may help.
Ds sleeps with me. Propt up on my arm and pillow.

Thanks galli that makes sense
X

My DS is in a normal wooden bed and hubby made a thing to go under the matress to raise the head end.

If we are away or anything we just put blankets or pillows under the matress to raise it......

Do you manage to sleep? That sounds all lovely and cosy but can't be very comfy for you all the time. What about community nurses/OT to help with bed.Get a referral to SW OT and they should get you something suitable. xx

How scary for you isitme; and I would second going to a&E or even calling an ambulance if he stops breathing again.

Some good advice from Gallivants about lifting the end of the bed - with ds's cot (which he was still in when he started school as he was so small) we raised the head end by standing it on a load of books!! But I will add that he wasn't able to move much, so no chance of him tipping it over!

With the flush - attach your 60ml syringe and squirt a few mls through his tube, stop for a second (leaving the syringe attached), then start again for a few more mls, then stop and so on until all of the water is gone.

He was fine last night (thankfully)
This morning after he woke up he was a little let's Stare into thin air...
But was fine after that too.
He is on pump on a slow setting.

It isnt all that comfy but if he's comfy then I'm happy.
I've been a bit emotional lately. Dh told me to try and stop ds from having his dummy. I just sat there and cried. Nearly everything causes him pain or hes scared it will cause pain and his dummy is one thing he is confident with.

Long live dummies lol.

How do we get refferal to sw and ot?
I do want all the relevant parties to be involved with his care.

Does anyone's lo go to a sn play group?
X

In our area you can self refer to Occupational Therapy, so you may be able to do that where you are.

My ds didn't go to a sn playgroup as such, but we went to a sn mother and toddler group run by our pre-school educational service. The staff there used to send the mums to the staffroom for a coffee so although we were there if needed, the kids got structured play without us being involved.

You may find that your ccn knows aboiut wht other services are available and can point you in the right direction (also wondering if your ds might benefit from physio as well?)

Ccn?
I'm going to take him to the next play group session I think. To see how he fits in.

How's everyone today x

Ccn - children's community nurse.

I've had enough. On the verge of asking gp to prescribe something to help ds sleep!!!
I'm absolutely knackered! He didnt sleep last night as he was trying to be sick. I let all of his stomach contents out so we didn't have another choking episode.
Salt and dietician on way.
Hearing test was fine. He didn't respond to 2 sounds but met minimum requirements.
Hope everyone Is good
X

Isitme. Just things would settle a bit for you and poor DS. I'm exhausted just hearing about the night problems. You can tackle anything with a good nights sleep. Luckily little DGS is reasonably settled at the moment, snotty of course and DD was snotty and puking (must be catching)! 2old and galli huge bunch of for coping so well, even though its hard. And you are right, no one CAN look after your DSs as well as you do, it's a simple fact of life.

We had a bit of a panic as Botox clinic (appointment this afternoon) phoned to say its a see and treat clinic so the boy could have had Botox then and there. Huge relief when the lovely neuro doc said he didn't need it now and reassess in 4 months. (phew!)

Isitme, ask about melatonin for DS. DGS has it and it's brilliant and a natural substance. Your DS is another complicated little boy.

Xxxx

. Must be catching !!

They were very sympathetic.
I'm taking ds gps tomorrow as he keeps getting out of breath ( time for new inhaler maybe?) and his aches and pains.
to ask for some knock out sleep meds
Galli added you on fb hope you don't mind,
Hope everyone is good x

Hi you lovely lot what I would do without you. Have been to a large nature reserve with DS's class (he only had 3 seizures so yay) it was really good older 3 came to help. It was good to meet up again with other mums and dads as well as the children.
Hope you and yours are wellish
Isitme am sorry your LO is breathless glad you are going to sort it out
RE Melatonin found it ok if we didn't use it regularly and gave it late 11 o'clock or late
Sleep well

hello, I hope you dont mind me joining. Lovely to see this on here.

My daughter is 3 and has eosinophilic gastrointestinal disease and a few other things. she had an ng on and off for 3 years and just got a gastrostomy last month. we have been struggling a bit as psychologically she is finding it difficult , she has almost developed a phobis of it, making even dressing her, sitting her on the toilet , never mind feeding her almost impossible. She just had to have maxitrol and putting it on involved three of us to pin her down !

Hi sub.
Thats what I was scared of with my ds.
Ds connector on his peg broke so I just sewn it into a small teddy.
He kept lifting all the teddys, dolls and people tops up to see if they were like him. Now he's found one he's not really interested.

Make feeding time happy. Let her know it's helping her.
We call feeding time tickle tickle.
When he first had tube put it he was on bolus feeds and he was scared of feeding time. I knew I had to make him accept it so I got him involved. I would hold Syringe with milk in with one hand and with the other I would tickle the syringe and make silly noises and faces.
He loved it and tickled the syringe himself!

Ds knows it's taken pressure and pain of him having to eat.
Hope that helps
X
2old sounds like you had a good time!
X

Ooo the more you try and force her to accept the tube the more she will 'hate' it.
Put her fav programme on from
The start and start her off with her milk.
Just explain, be loving and caring but not forceful.
Our lo's are the shy bunch and if they feel they need to kick up a fuss because we are, they will!
X

Hi, Sorry I didn't get on yesterday. Some stuff to do this am but will check in and catch up later tody. Hope everyone has a good day. x

Hi everyone
Hope your all good
Managed to get ds out of the pram to play in the park today!
X

Just wanted to update you all with ds.
He's been to playgroup for the first time today
And omg he loved it!!!!

He didn't really play with other kids but he still played!
X
Hope your all ok x

So pleased your DS enjoyed playgroup, isitme. It must be so lovely to see him happy and relaxed

submarine. Hope you can find some good advice here re PEGs. DGS accepted his with no issues, despite our worries. REALLY surprised as I thought toddlers particularly were body conscious and hated even the slightest scrape to the knee, let alone a horrible PEG! PEG Teddy sounds brilliant!

He was just like a 'normal' toddler!

The only thing is he becomes very breathless very easy. Taking him to gp today. He walks across the road and he's out of breath. Which isn't like him. He used to run for 10-20 mins non stop and still be fine.

Hope everyone is all good x