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

wow here speaketh the goddess nurse of the NHS DD3 moans foot hurts last night. She had stumbled off pavement whilst at day services yesterday Told her not to make a fuss. Finally after friend nagging took her to Minor Injuries today. She has 3 fractures in foot now non weight bearing.
Off to Fracture clinic tomorrow 30 miles away. Another one to bath;/shower All friends are laughing serves me right. What a useless mother
I am a bit worried about ds5 he is becoming agitated again and am wondering
if we have reduced his Amitriptyline too much.
So sorry for the whinge please forgive me
hope all is well with you lotxxx
Grandaughter hope you are ok love Granny

2old. Its the cobblers children thing! It turned out DD had a healed # collerbone from falling ice skating ('it'll be OK dear') not even taken to A&E by moi. This turned up on a chest xray after I left her alone (to go to work) with a nasty flu ('phone me if you feel worse [she was about 17]) turned out to be viral meningitis - flew home from work and ambulance to local A&E sigh....

Hope you sort out DS5 neuro pain is just awful.
x

I suppose things are a bit better Spent 5 hrs in fracture clinic all old farts moaning (is this us?) drove me loopy. DD has now a plaster cast Man. United colours supposed to be non weight bearing using crutches I said fine but be prepared to have her back with another fracture so has a walking boot but must use for essentials only. Have just showered her NIGHTMARE. That is 3 i am showering.
DS still not right hope we are not on another spiral down.Feeling quite down
PULL YOURSELF TOGETHER WOMAN.
After long moan hope you are all well Hope your DD is coping with her pregnancy
Grandaughter hope your new image is awesome love to DGGS

Aww granny I do hope things pick up for you soon!

Hope every one is good
X

2old. Moan away if it helps . Sorry DS is causing a worry. It's the worrying that is so draining.

Dd is ok ish. Nausea, tired, fed up feeling awful but will hopefully feel better after first 12 weeks.

Hope everyone is keeping their heads above water as crappy summer draws to a ( hopefully) nicer end.
Xxxx

And so say all of us re weather. Too tred to say much more DD5 awake from 24.00 and still awake @ 06.00 (getting up time) Ds seizure @ 02 20 did not settle until 05.00. Had 2 more at school. I am totally pissed off.
DD2 now quite happy with Man U coloured plaster
Hope you are well hope DS nausea goes soon I can remember how awful it is
Love yo my new GD and my DGGS xx.

Granny I hope you got more sleep last night.
Got head up arse ATM
Doing driving stuff. Im studying theory and want to get out of the way so sorry for my lack of presence,
Hope everyone is well
Ds seems to be coming down with something but can't quite put my finger on it yet

Love to all
X

Ds toe nails are peeling pretty bad.
3weeks I've been trying to get in touch with dietician!
No reply yet.
X

good luck with the theory test, isitme. Lots of practice online is pretty available. its easy really as long as you keep calm

I taught DD and DS to drive. Old fart has zero patience in a car and insisted on 'demonstrating' all the time, like that was going to help them learn

DD passed 2nd time and DS took it around 6-7 times

I gave him bach flowers calming drops before the last 2 tests. Maybe psychological but he did pass eventually!

2old. I feel tired just listening to your night

Hi all
Many apologies for not posting earlier. Life a bit hectic DD's foot, DS making a lot of his pain (have not a clue what is going on suspect it may be his wheelchair) but who are we----just his parents!!
Unable to pin anyone down re DD's colostomy EVERYONE is badgering me----do I do theatre lists? But in their defence they need to know for DD5's respite
And now for some good news the oldest DC's who had 5 nights/year it has been upped to 10 nights/year so DH and I could have could have 3-4 nights on our own 1st time in 44yrs (NONO to rudies)
Hope you are all well. Still little sleep.
Love to you all especially to my dear Grandaughter and DGGS xxxxfor him
Hope I have not bored you to death
XXXXXX

Hi all, I have just jumped across from the cp thread (waves to sneeze) and wondered if I could pick your brains about dd3 and her tummy issues.
DD is 11, quad cp due to oxygen deprivation at birth, has problems chewing and swallowing but no history of aspiration. Very slow to gain weight and lost 1/3 body weight after failed botox, never really cught back up again.After a swallow study, finally took the plunge and got g-button last summer - still give 3 meals orally but give top up feeds morning and night of 1 can pediasure 1.5 with fibre each time. After surgery everything fine - removed stress from mealtimes, taking meds etc, even makes travelling easier - we live in USA and come back for a month every summer to visit family in UK.
Back at school here at the end of August - 4th day sent home with diarrhoea - at drs next day they took samples but just sent me home with pro-biotics and to follow a bland diet. Stomach back to normal over weekend, so sent back to school on Tuesday. Thursday sent home at 10am after more diarrhoea. This continued until Sat. morning. Back at drs Friday - tests all back clear, so just continue on pro-biotics as must have been a virus. Back at school Monday last week - finally had a bowel movement on Wednesday - back to normal consistency. Friday had appointment to change g-button - just in case of any contamination on inside, although this seems unlikely. Friday seemed to have increased drooling and complaining of teeth hurting. Diarrhoea started again Saturday night, now accompanied by vomiting. Could it be the pediasure? The stool is very runny with a lot of mucus each time. The vomit was half-digested pediasure. Sorry I haven't read all this thread in case this has been discussed before, but do any of you have problems with pediasure, and do you think I should stay off it for a while? Planning on phoning gastric dr in the morning - they have not seen her yet, just gp so far.
(ps sorry for long post and tmi on poop)

Welcome wentshopping
Hope we can help you in some way or the other

Granny a night off sounds nice.
Dh coming over next week woooop

Ds is ill
He's got a cold/sore throat/ teething.
He may need a.b for the throat.

He's not tolerating feeds though now.
He was fine this morning and afternoon so they were fine.
He's been sick and I had to empty the very last bit manually.
And now he will scream while on pump on a slow setting.
I managed to shove some nurofen down him and about 10mls of milk and 60 water. Which isn't all that bad I suppose but he's missed out on about 440mls of fluid.
I will be checking for wet nappies in the morning.
He will need uring checking and throat,
He does need to see the gp any way about peeling from the middle almost like cottage
cheese?? anyone any ideas??

X
Ps I will be up so do talk lol x

Wentshopping
Is the peadisure a new thing?
Does sound like that's the cause.
Ds was in that for a week or so and he was such a pain in the arse. (not his fault)
He just couldn't handle it. That's like having a full meal sat in your belly. If you can't digest it it will come out via one of the 2 exits,
I know it's expensive stuff but have you tried neocate??
Ds is living on it ATM

I mush try and slow the pump down more and try to give him feed.
Even if he doesn't have it it won't make him want breakfast in the morning if he doesn't have milk so no difference
X

Hi wentshopping - from my Ds's problems with various needs, i would be suspect that the pediasure could be causing problems. Perhaps the first tummy upset has affected the good flora in the stomach which is now causing problems?

Evening all,

wentshopping is it possible that your dd is having something orally at school that is disagreeing with her?
Or that the cause is not a physical one, but something like stress/anxiety?
How long has she been on Paediasure?
That is what my ds is on, and he has not experienced any of those symptoms.
Her dietician should be able to give you some guidance as to what to do about it.

Thank you isitme1 and starfish. I wonder if you're right about the flora. She's been on pediasure since June 2011 with no problems. These past three weeks she's just not right. I'm going to give her soy milk tonight just to have something in her tummy to get her to sleep, then speak to gastric doctor tomorrow. I'll do some research first tonight and see if neocate has a different name here.
Hope your ds feels better soon isitme1.

Hello nine - just saw your message. She has a packed lunch at school given to her by a very sensible aide. (I mean I trust this lady to wash her hands etc). However there does seem to have been some "coffee and cake" going on in speech time, which I should maybe get them to stop. She was having hot chocolate, not coffee though :)
I always sigh when we are at the GI clinic and they wheel in a dietician. They give me a printed list of suggested high calorie food, half of which are not suitable for dd, because she can't crunch, chew or swallow them. Things like tacos or onion rings. (We are in Texas). Thank you again

Oh, sorry to hear your dietician experience leaves a bit to be desired. We must be really lucky with ours.
Hope you get to the bottom of the problem soon. (no pun intended!)

Hi wentshopping. We have no experience of pedisure. DGS has something else i think, but will check...we call it all milkshake

We remember a dietician saying the same to DD about DGS..you need to give him breakfast-mid morning snack-lunch-afternoon snack-tea and a supper plus milk! hahahahah we could barely get 2 small meals a day down him pre PEG! I think dieticians come from planet crazy!

re the diarrhoea and upset tum. its not unusual for children to have persistant on and off diarrhoea if they started of with a nasty bug. the bowel gets so inflamed that its easily set off again over the course of weeks. See what the GI doc says but look to give a diet of extreme blandness for a few weeks and the probiotics. Just to give the bowel a rest and to recover. Small, frequent and boring. Maybe the pedisure is just to high in fats to be tolerated at the moment? definitely stick with carbohydrates if you can? Talk to the experts though, as I dont know if your DD has special considerations re diet. I'll shut up now but did work for a phone advice service til I retired so not talking out my .

DD had a bit of a tummy bug last week as did her work colleagues, I had it in a minor form at the weekend, and DGS poorly with same thing since sunday. Ho hum PEG is being used with great effect!

Isitme. Hope DS is picking up with the abx. Thank heavens for the PEG to get medicines down. Its with bugs and meds that they come into their own xxx

Wentshopping your getting some good advise here!
how is ds now sneezesmum
How is dgs?
Grannyyyy where are yoooouuuu??
Hope everyone is well
Gali,been on, tooloud and everyone.

Quick question
Ds had blood around his anus today.
??? He is slightly constipated not a lot. He's been a hell of a lot more constipated in the past.
Will ring gp In the morning
X

Thank you for all the advice - you are all making me feel that I'm not going crazy with this.
Just back from GI doctor - who worked us into her lunch hour. She suspects giardia as it apparently has a habit of coming back a few times. She also said what you mention sneezeand star about the bowel being inflamed from the original upset. So the plan is to treat as if it is giardia, follow the bland diet (which dd is currently on) and see how it progresses. She didn't want to wait for more tests as it would waste another week of on/off diarrhoea - I just need to monitor dd and see if any improvement/worsening. And she said ok to carry on with the pediasure.

Grandaughter I am still here stressed but surviving but like a bad smell I will always be here Re blood could it be an anal fissure Get it checked So glad DH will be here next week x100
wentshopping DD5 was on Paedasure with fibre she has PEG and has diarrhoea and farts non stop even builders were impressed. Now on Peptisorb still farts for the world and has frequent diarrhoea. Now having colostomy due to strange anatomy (rectovaginal fistula) May god help us when she has wind Anyway welcome to this thread they are all potty except me.
Oldsneeze and peedles hope is all well
love to all and may all your Scallywag sleep well DS is in pain mode so sleep here will be a luxury( why doesn't old fart hear)
XXXX to all

2old. You deserve a bit less stress and a bit more sleep. Hope DS can sleep and you get the pain sorted out. That is just torture to see LOs in pain or ill. I wish a boring life for you where all your younguns enjoy robust good health and sleep like logs

isitme. if its fresh red blood it probably is just a minor tear as 2old says, but i would certainly get him looked at with all his other gastric problems. Hope DH arrives refreshed, I can see you shoving DS at him and saying..now its your turn!

DGS is fine and over his puking bug very quickly, temp settled very quickly with some calpol. Very tired boy today after no nap yesterday and a bad nights sleep. keeled over for 2 hours then hoiked out to get his new AFOs. Beautiful fit (unlike last times unwearable disasters) complete with his favourite tellytubbies, so we will see how he gets on.

Wentshopping, hope you keep an eye of this threat as you have lots of gastrostomy experience. DD and I are rank amateurs..its there, it works and DGS is heavy!!!

Lord I fancy a Gin and Tonic!

Oh granny
How are you??
Had my results appointment today,
Thankfully nothing drastic. I need antibiotics every day for the rest of my life by the look of it.
The gp had my urine results from beginning of the month and it showed I had an infection and needed different antibiotics!!!! He did f.a.
Not very happy with him.

Dh needs a picking up. He's very down In the dumps so Im thinking of how I can cheer him up.

Great aunt sneeze there's something In the air!!
I'm ill
Ds is ill think he needs some antibiotics for chest.

You didn't say how dd is.
Hope she is well
X

Computer blew a gasket so I will start again!
Nothing much happening here. 2 LO's have gone to Respite tonight until Monday OK OK I do realise how lucky I am!! Planned to do something exciting this w/e but now with "Hop-along" our options are restricted.
Have now got a provisional date for DD5's date for her colostomy Oldsneezecake you may understand how I feel do I go with head or heart but her urinary infections are becoming problematic so ofcourse I know which way to go !!!
Next problem DS4's birth mother has no idea how disabled he is (she thinks he can play football) so my task is to tell her how disabled he is, How can I say negative things about him as he sits next to me. I feel when he is in respite it may be easier. We are thinking of a meeting with her in the spring so as SW says she must know what she did to him. Oh god it is so hard. Enough of my problems.
Hope you are all well and all is well in your world
Loads of love to my newest Grandaughter and DGGS hope DH is home very soon XX
SORRY FOR MOAN
Sleep all you little scallywags I tonight will only get out of bed for my bladder. Only Oldsneeze may understand