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 will be asking next time about stool test!

Complete different topic but he has swollen testicles?

Took him ooh and they gave antibiotics despite not having a temp?

His bits are better now thankfully!

Hes got an appointment for endoscopy and colonoscopy next week.
How is everyone

Hi hope all is well with all you miscreants

DGD glad his "goolies" have settled down.
So you have scopes (or rather DGGS!!) next week. A'bel has hers the following week so loads of good vibes!!

2 LO's in respite so I must catch up on the grotty jobs.

Love to all the little (s)tinkers!!

Thank you granny.

Well the lady dr we saw at hia gastro appt was really intrigued with everything going on and plan is
urine sample and stool sent off (I have kidney problems so might be something there?)
bloods
scopes
microbiology involved
if scopes show nothing then 6 food elimination diet ( dairy, soya, fish, eggs, wheat and nuts)
all else fails gosh.
She will see how pain is and if needs be prescribe oramorph

how is everyone doing?
Not heard from the other newbies for a while

Hi DGD. Has your Little Lad had his scopes yet? A'bel goes in on Tuesday for her scopes on Wednesday.
Life as usual MAD

Hope every one else is OK!!

Love to all (s)tinkers

Granny I actually thought you was here! Lady here has had lots kids with sn and has a little girl in atm. I just thought omg is that a'bel but it's a little girl called sarah.

Lovely people om the ward.

Hes bleeding in stool which is convinent as ive saved nappy for gastros and stool goes for sample too.

Scopes are tomorrow. Hes 3rd on the list

Grandaughter, wish I was with you!!!

Scopes should be over by now for poor little DGGS hope he is OK and you have some answers soon.

Glad to hear there is someone as daft as me, if she is still with you send her my regards It makes things so much easier if you get with a good crowd.

Hope you get home soon.

Her lo was blind and had cp. They need a hdu bed for after theatre which they couldnt get so they had to go home after staying a night and lo being nil by mouth
she had problems regulating body heat and she was doing ok that day otherwise last time they had to cancel as she was too cold

Scopes showed nothing significant
juat waiting for biopsies and stool urine and bloods now.

They didn't pick up his liver levels were almost double normal! !

this is another thread

Good luck to you and a'bel for tomorrow and Wednesday x x

NAUGHTY DGD you beat me to it. But I had to stuff my face!!

Ready for tomorrow, organising the old fart (hard work).

Have read your other thread and was interested in the meningitis link. Will catch up later.

Hope all my DGGS's are ok

Ahh granny. Have been thinking about the both of you today. Hope you both survived the bowel prep!
How did everything go?

Hi DGD back home. Not too bad in hospital, A'bels friend was in and I love his Mum!! Seriously we get on so well and we just fell about laughing all the time!
On a serious note it was not her brilliant GI consultant but a colleague who is an arehl*! who scoped her. His people skills zero so I know nothing so will wait for results,

Thanks for your thoughts, hope you are all plodding along OK

Back soon XX

Glad things went well

how is everyone?

Found out ds has c.diff and a strep infection fron October!

Bump.

Anyone around?

Yes
im still here hoping the rest come back!

My ds is on the neocate advance and thats thr only thing he can have.
Afaik there's not an alternative for such allergy ( can grt the pepti stuff but still some dairy in it)
that's what I remember.

He has a water feed at night and 4 feeds during the day. How old is your lo?

Welcome to the club

Mixing wise I make all4 feeds together in a blender, 3 sachets of feed does me 4 feeds so need 1020mls of water for 3 sachets
blend it all at once a lot easier

When I was on neocate plus high protein, mine came in ready made cans that I just opened. I was on 6 cans over a 12 he period. Now, this was an adult portion, so there would be a size factor.

Maybe check and see if you can get the ready made formula. The shelf life on an open can was 24 hrs so I could slow down the feed if I wasn't tolerating as much on a particular night iykwim.

Good luck to you and your lo.

It says you can make them and has to be used within 24hrs so I make mine the night before and store in the fridge. Hospitals actually make some and freeze them for the weekend when theres no one in the milk kitchen (well here at the childrens)

His feeds work out as 4x250mls of neocate

would love ready made cans as it makes the whole thing easier as if we dont have enough to do anyway!

My ds is 5 in September and his reflux is still really bad, hes on max omperezole 40mg? Maybe worth looking into if he doesnt already have high dosage. He was on 35mg but the extra 5mg really made a difference.

Im currently getting stuck with him eating. Hes eating chicken eeveryday but ive noticed his pain is worse after eating but dh is adamant he eats which ive said jd rather he has a feed on which wont cause him pain than offer him something which I know will hurt him. Aibu?
Will message everyone to come back lol

ps im watching this thread so I get automatic emails when someone posts so if it ever goes quite im still here

I wish there was someway for me to get you the cans that I have left over, but I'm in the states and the postage would horrendous. ..

I was an adult that had to have half my stomach and 30cm of my small intestine removed due to ulcers. I had a g-tube and then a micky button for almost a year. It was a horrible year and the medical costs just about broke me, (financially ,as I am the main breadwinner, and emotionally) but I am thankful to be alive.

I found this website when looking for answers to the questions I had about rub feeding and the advice on this forum is priceless. I haven't posted before on this thread, but all of you saved my life and gave me the strength to keep on going. If you could take on all you do with you children, I could at least take care of myself.

I owe all of you a massive thank you. each of you are stars to me and my hero's.

Darla

Argghh lost my post!!

darla! Hope your feeling better now! Your more than welcome to stay with us

Shiney my ds is immunocompromised too. Sounds like our los are lost twins lol!
ds lisT asd adhd, heart murmur, gut dysmotility, severe reflux, chronic pain, chronic constipation, ftt, low iga levels ( immune problems ) allergies dairy soya nuts fish eggs wheat, asthma, speech and language delay, development delay, eczema. ? Thalasemia, ?Colitis.

He was on ranitidine but it didn't agree with him, he was on domperidone but doesnt help all that much and even more risky as he has the heart murmur.

Hes on long term antibiotics amd lots of laxatives. No one has ever asked how the feed is made and its what the hospitals do too

Ohh and oral foods he cant have a lot so he's mainly restricted to chicken veg fruit and rice I do try and make the fancy vegan cakes etc that he can eat but just not the same.

Have you got any more dc?

darla wbu? Have you got any dc?