taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

I wouldn't push her with the oral feeds if shes struggling. I would offer small amounts but if she refuses let it go down tube. Rather than having a battle on your hands at each feed.
Shes on the right meds. Only extra one I can think of is erthroymicin (low dose) which they sometimes give to help stomach empty quickly (never worked here we hadto stop))
Ds brushed his own teeth this morning. Minus toothpaste but still good for him as his aversions mean we cant although we try and encourage it.

A question for you all.
ds is complaining of pain again in his stomach betweenpeg and bbelly button. He says its going push and bang bang not very helpful. Im a little confused about his bm. Hes been very loose but I thinj its overflow again?
He sees consultant next month and theres no way he will see ds earlier. He is also refluxing a lot more!

16 yrs ?? Wow ! I was hoping once she weaned she will b okay or doesn't it work like that.

Its making sure shes getting enough fluids, vitamins, calories which takes a while for those who arent used to it.

And its a

boy
He flashed at us too lol

Thankyou DGD another DGGS I love boys (and girls)XX

Not a happy bunny here. Had to bring Jay home from respite on Sunday......Several brisk blood losses from stomach. Upshot he needs a new JPEG which will be done at the end of month. Surgeon very kindly arranged pre-op while we were at hospital, bless him!

Just managed to get Annabel's room decorated before she came home from respite.

Hello Mummy hope all is not too difficult for you. Jay has been tube fed for years and like starfishmummy's DS is nearly 16 and his tube is a life saver.
Ditto Annabel.
Would they not put a gastrostomy in your DD. Jay is fed 24/hrs continuosly a day @ 52mls/hr via the jejunum so he can't be sick

Hope you other tinkers are well.
Giddy hope you are OK
Love from Snot House

That would have really scared me granny! Not long untilhe gets a new one.

Ds1 has been pretty bad lately hes refluxing more, im sure its overflow and he has pretty bad tummy ache tooso drs booked for him and ds2 chest has been really bad and just ddrinking his bottle sends him into a coughing fit so he needs checking too.

Would post a scan pic but didn't get one as I was 50p short

Congrats. Ilovemonsters. Another boy, you are going to have your hands full if baby al is anything to go by!

Sorry poor Jay is going to have more problems. I can't stand all the aggro and we are so lucky els tube seems to have been very straightforward so far.

Mummywithsmiles. Our gastro surgeon said once most babies start on solids the refluxing stops. Unfortunately most tube fed kiddies have grotty milky formulas so the refluxing just carries on. Does your LO have an NG tube, or a PEG tube?

Ilovemonsters
Ds rarely uses toothpaste due to oral sensitivity. Suggestions from his dentist have been dipping his toothbrush in children's mouthwash (we used the bubble flavoured one as he dosen't like mint) or there is a toothpaste caller OraNurse which is flavour free and doesn't foam up. I just use a tiny bit.

We buy it from the pharmacy at the health centre where the dentist is based as she has asked them to keep it in stock, but I guess others may be able to get it (Its a lloyds).

*bubblegum flavoured not bubble!

Thanks for that! Will get some of the mouth wash for him. His teeth are actually in better condition than I expected with all that acid and no brushing

help please wwyd?
im a little confused about what to do. Ds has been complaining of tummy ache for a while now which seems to be getting worse as its making him cry. It takes a lot of pain to make him cry as he just normally complains about it. Took him go yesterday and he gave lactulose to help with constipation alongside his normal meds. I gave him it last night and nothing this morning its just water so I think overflow? Its got the black blood specs in it too. Hes had some paracetamol for the pain and is now on his feed. Im thinking of not offering food today and just do feeds to see how that goes? Needs urine checking so going walk in centre soon for that to be done but hes just not himself he is in pain. Dont want to go hosp as I dont think its an emergency but do think something isnt right?

Really don't know what to suggest. What do you think is going on, you seem to have better ideas than most of the gps who see him. Is it constipation and slow motility?

DGD have just read your last post, am very reluctant to suggest what to do, not a good idea unless he is seen. You know your son so you must throw a strop even if it makes you unpopular.
Take care, XX
Keep us posted,

Make a fuss. Get him checked for everything. Please. Similar happened to Ds - he was bleeding in his stomach.

MAKE A FUSS!!!

He is bleeding in his stomach I know that because of the black specs of blood in his overflow but no one cares. Took him walk on centre then ooh who just sent us home
a+e wont do anything as hes ok in himself apart from when he gets pain.
Will ring his gastric on Tuesday and demand somethingis done!

makes interesting reading as salt thought he was borderline autistic

Hes been pretty bad last night.
He was sick around an hour after eating.
He was trying to poo but couldn't and was sick again after a few times. Altogether he was sick around 6x last night. Went out and bought diarolyte and hes managed 100mls last night and was trying to be sick a few hours after but was stopping himself too.

Hes been sick after some orange juice this morning. Hes got a lot of wind too

on a plus note baby no.3 has not stopped while I was writing this post

That does sound very similar to the stories that I've seen about autistic children have these gut problems.

Try posting on the main SN children board as there are lots of parents who have ASD children who have mentioned these gut problems and who have done regimes that keep the problem under control and who have seen improvements. Xx

Thank you

I did create a new thread with his current problems. ..
this js what it said
Ds has a background of gastric problems,
-reflux (so bad hes fed via tube)

• chronic constipation
• he gets bleeding on the inside too

This time last year he was constipated for over 10weeks. The only reason why he did not become really ill was because of overflow.
Hes been complaining of pain for a while now, took him gp last week and he was happy with him. He felt his tummy and prescribed lactulose. Hes already on stronger constipation meds.
His pain is getting worse. Low grade temp (37.7)
In between being sick and overflow hes happy until he gets pain. When a hcp sees him they see a happy little boy who suffers then is happy again
hes been sick 6x last night. Hes been sick this morning too.
Hes in pain and keeps saying it hurts. The gp and ooh did nothing. Wwyd?

He managed to eat rice last night and kept it down. He was sick at 1.30am but was bile
hes had some tea this morning. He looks a little off but is ok. If hes ok today will ring his gastric tomorrow. If he starts up will take him a+e

Hope everyone is ok. It keeps going rather quite here!
Giddy not heard from you in a while!

Ds passed some hard stool 2days ago (not a lot) and tiny bit last night. Still spiking evening temp 38. I got in touch with Sheffield telling them I wasnt happy with the care here and hes recommended I go to gp and 'insist on referral as I can due to children's charter'? Any ideas what that means? Tried google but not much help.

Ive emailed local pct for help and if that fails will get in contact with mps.

Yay!!! Dietitan was looking at swapping ds off fortisip - which he has in the mornings - as there are signs that he might not be tolerating it too well. Finally she has got back to say she will switch his morning feed to Peptamen HN. "Normal" peptamen suits (he has it overnight) so hopefully the hn (which is higher calorie) will do too.

Sounds good starfishmummy. I'm totally useless about formula feeds, so I assume peptamen is good! . We are now purely BD and DGS looks healthy but we still struggle a bit getting weight on as volume tolerance is a nightmare. Reflux is only dues to low muscle tone, and he doesn't seem to have any pain.

Giddy and I have been really busy recently, totally exhausted, plus she has started back at work, so not so much time on fb and MN!

It seems to suit ds although us not terribly popular with our dietitans as it expensive!

I did look at BD but the getting the volume in was going to be a problem. Ds eats too but not enough - although I think we are in that catch 22 of him not being hungry because of the tube feeds...and his favorite foods are fruit and veg so not very calorific (and we can't get away with adding butter to the veg!)

Glad your feed had been changed. We are on the 'safest' one for ds. Once we manage to get him back to Sheffield will ask them about other feeds if there is any that's suitable but I doubt there is due to his slow gut.

Tried to get in touch with the pct. Not heard anything si will ring them today as im going on Monday armed with all my information so he cant say no! Need the refferal done so we can get ds settled before baby is here

Nice to know shes ok. How are the boys