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!
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2old: Only day 2 for you but we are into week 4 up here!! And we are still waiting for summer to arrive :( I am off to the Netherlands on Sunday for the last 2 weeks in the hope of some warmth and sun :)

Have a brilliant sunny time. Have cleverly deduced from two accounts you are from Scotland.

Didn't think there was too much of a change with holidays
But then again I've never give it too much thought....

Galli I hope you have a brill time well done for getting away with gastrostomy!!

How is everyone?
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Hi everyone. Isitme...Lovely lovely lovely to hear your boy is talking to you. It must be wonderful to hear at last xx We are still waiting but have a bit of equipment from SALT yesterday which I will put a seperate thread about as we need advice.

2old your holiday on the canals sounded lovely but frankly a bit skint and a week with DH would be murderous - he's such an old fart!

Welcome Bee and Submarine. I've not much help to offer re accepting the tube submarine. DGS accepted his pretty well with not much of a murmer and has thrived on the additional calories. He now seems to weigh a ton and has shot up around 9 cm in a few months! Weighing him in a week or so and we'll see then.

Sub. Have you though about overnight feeding. you could set it up when she is asleep and if you are cunning disconnect before the pump alarm goes off (always disturbs DGS!). Otherwise galli has lots of good suggestions, expecially the 'tube teddy'.

Thank god DGSs PEG journey has been smooth so far, TPN is a nightmare.

xxx

sneezecakesmum perhaps your old fart and my old fart could get together bet mine would win!!!!
Hope every else is well. Am fighting the DWP re DD2 and ESA guess what I am sure they did not read the medical notes submitted (another thread)
LO's ok DS had seizure which has thrown him completely. DD very grumpy ----no school.

2old. hate and dread fits. DGS had them at birth - hundreds of tiny vacant episodes before he was one. His HB was 6.5 when they started at 6 months but they said it wasnt that, but they stopped when his hb was 12ish. Probably did lower his threshold, but ? who knows. dumb buggers should have automatically given him iron - 4.5 lbs and IUGR term baby! Fully bf for 66 months as per WHO instructions so no reserves at all! Would have saved our sanity not to have endured months of 'blanks'. Hope DS recovers and has no more, maybe he has grown and needs an increase in meds?

No one can out old fart my DH! He has gold medals in old fartism!

sc'smum if there is one thing I it would eradicate it would be epilepsy. Like your DGS Jay has many, when in hospital in one day he had 15 when his SATS droppped to 50%
Daft question in my day (1897) IUGR always had low HB what has changed?
RE old fartism my DH was born with a gold medal around his neck rather than the cord

Loving the fartism
Ds cutting a tooth. Not looking forward to the next week or so!

2old and sneezecakesmum I have no experience with seizures so I shall leave that to you. I do hope ds has a speedy recovery
Iugr? What's that? Trying to think but it's not coming to me.
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Isitme: From google it is Intra-uterine Growth Restriction, not sure if that is it though. I too have no experience of fitting/epilepsy so can't help with that.

Hope your DS' tooth comes quick. :)

2old: Yip we are in Scotland sure enough. So glad we don't have th eold statementing system up here :)

Epilepsy is the pits. All fingers and toes crossed it never comes back. Will be more than devastated if it does.

The docs never said officially IUGR (when the baby doesn't grow enough because the placenta functions below optimum) but 4.5 lbs at 37.4 weeks with a placental abruption when his initial predicted weight was 7.4 lbs . I know they automatically give iron to prems but didn't think of it till he was transparent at 6 months.

DH was born in the Old Fart Tree, fell out onto the Old Fart ground and the Old Fart Tree fell on top of him. I'll stop now as he's got his old fart face on!

We should form an "Old Fart Wives" club... mine is an Old Fart, too.

DD still fits or blanks out dozens of times a day, even on 3 anti-seizure meds. She officially has epileptic encephalopathy now, it hurt me to hear originally, but I have just rolled it into the "big book of dd"... She was having an adorable moment telling a story for her Nana and Poppa - it wasn't until I looked at the video I made to send them that I realized that she "blanked" right in the middle... it has become so common that I don't notice all of them any more - just the "big" ones.

But on the bright side, without her tube, I would have to battle her to take her meds multiple times a day...

YEP let's form an O.F.W. club bet mine is oldest----do we need a new thread?
I would be stuck without tube too for DS's drugs.
Anyone know about colostomies have totally forgotten.
Have had a bad day Old fart escorted home by police no he hadn't been caught shoplifting, took DD out in wheelchair and the whole of the back sheered off at the seat and she doesn't balance well. O Fart struggling to support and push DD in wheelchair with no back whilst carrying 2 bags and back of chair but kind policeman took pity on him and helped him home
Hope you are all well xx

Bee and 2old. We have an old fart next door, and 3 old farts across the road, and a brazen hussy the other side Our road is sooo boring.

Bee every time DGS blanked (literally a second or two) our hearts stopped and we felt sick. He had them around 60-100 times a day, still only equals a minute or two but it took all attention away from working on the physical side for many months, so his first year was a total washout. Cannot imagine ever not noticing one, and still do the snapping fingers when his head droops and his eyes roll slowly up! Its just because he's too tired to lift his head as he looks at us immediately - its horrible!

2old. those policemen sound wonderful. Poor OF with his equipment malfunction today, must have been a nightmare

Have had an old thought, IUGR was called "small for dates" in my day 1867 and we were told they were "the dustmen of the world" how awful. Homegrown DS was full term and weighed !.9K, he is a senior manager in a well known company having got a 1-1 at uni. Do not often talk about homegrowns but felt it was appropriate at this point.
Isitme where are you my friend
XX to all

Aww I'm here 2old did you miss me
I don't have an old fart dh is 24 acts twice his age though
Sneezecakesmum my dm is expecting and she has Hughes syndrome (sticky blood) her baby is measuring according to dates buuut her placenta is bleeding. Is that the same thing?
I think it's bleeding because she is on aspirin and the clots that she used to get ( that killed 3 babies) are now being broken down and it's the 'left over' blood.
If that makes sense?

Another question to peck at everyone's heads
Ds had some very dark (almost black) thick liquid come out of tube this morning ( proper out I was emptying tummy)
Never happend before so what do you think it is?
Think he may be starting with another infection because when he gets one he always pulls on peg which he has started doing today
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Hope everyone is here
and for all
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When you say blank do you mean like stop breathing or stopping what lo was doing in the middle of them doing it?
Ds has the atop breathing thing. Hopefully they will find its resolved.
I dont really know as its sleep apnea.

Come on everyone where have you all gone?

just figured out the undo and redo button on iPad lol

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Isitme: Doesn't sound good. Was there alot of it? Could his tube have dislodged and be down in his gut and it be poo you are getting back, or do you tihnk nmaybe blood?....Did you save some ( gross I know). If you did give CCN or health visitor a ring and ask them to come look. xxxx

I was going to ring them anyway as once a week I'm supposed to extend tube so it goes into tummy and push it in and turn. It turns everyday itself anyway ( when dressing him) and I couldn't do it today.
The black stuff was like black gunk. Not seen it since though.

I'm worries about how is tube is in as it's quite hard to push in and it hurts him (he says ouch and cries)
I'm going to try tonight when he's asleep and are what reaction I get
How are you and ds?
How's everyone?
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Isitme - I don't want to scare you, but I think you should get it checked out When DS was younger we got blood back out of his tube which was very dark; and it was due to a malabsorbtion problem; which saw him in hospital while he had lots of tests.

Hopefully this isn't the case for your ds - what has he been eating?

I rang through and CN are coming tomorrow.
They said either old blood or old meds.
Cant remember what he had for tea the night before
He's had salmon and broccoli for tea yesterday (he just ate the broccoli)
For dinner he had pizza ( tesco single pizza which he eats at least a 1/4 of)
Hmm night before fish fingers I think. Noo it was KFC (birthday party food) which he hardly ate.
We have had the malabsorption issue in the past I think. When he was put on peptisorb milk his poo was stringy and dietician said malabsorption.
It was never looked into properly.

Another thing too. His gastrics said he had an allergic gut (result of endoscope) and then he was put onto the peptisorb but before that he was on fortini high energy milk so was he just allergic to fortini?

Starfish did your ds have a good birthday?
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DGS will never be a dustman because his arms and legs dont work well enough!! We think he has reasonable intelligence but its hard to really evaluate with the arms and legs and no proper speech. Thanks 2old for the reassurance re your DS, I dont see any major reason why IUGR babies should be significantly disadvantaged mentally. Sodding doctors and their doom and gloom.

Isitme. IUGR is luckily nothing to do with sticky blood (which is awful) hope your DM is OK and the bleeding is controlled. DD is wanting to have another baby

The vacant episodes were teeny fits. DGS would just stare into space for a second and then 'come back'. Its unmissable really. He does a bit of breath holding occasionally but its different. I would be rather scared if black stuff came out of DGSs tube! It might be old blood as galli says but if its stopped hopefully not a major problem.

Enjoying a bit of sun

Isitme is Hughe's Syndrome similar to Lupus? Did my Midwifery many moons ago did not enjoy it so skuttled back to paeds as soon as I completed my training.
Sneezeymum ! think DS has these vacant episodes as well as full blown seizures, he stares blankly for about 20- 25 secs and goes completely grey including his lips looks ghastly.
Itisme sounds like altered blood to me have had it happen once but we did catch dd's tube and she did have dark brown in her aspirate
Both mine are on Peptisorb it stinks but they seem to tolerate it well
WHAT BLOODY SUN

I think it is like lupus. She's on aspirin and the bleed adjacent to the sac is getting bigger but baby is fine.

I don't have a clue what it was, might of been old blood.
It did worry me when I couldn't turn the peg.
It's sunny here but very cool. It wasn't sunny this morning and it's been boooiiling past few days
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OK, lots of answers... sneeze dd blanks many times a day - her last 48 hour EEG she had over 500 distinct fits - they are not "absence" fits exactly, because the absence ones have a classic pattern and for hers, the pattern matches what you would see for a tonic clonic (the stop breathing, cry out, drop and shake ones). We joke that it is her screen saver mode (if we don't joke about these things, we'll all go mad)

Because she is so involved medically (her gut has failed, kidneys and liver are failing, the epileptic encephalopathy, her autonomic nervous system is involved so she can't regulate her body temperature or heart rate, she has a bone marrow disorder, has had a couple of strokes and so on) if we got anxious about every thing that we can't fix I think we might lose our minds (or lose the opportunity to enjoy her time with us). She is a hospice patient, so we know what her future will hold, to a degree. We have opted not to add any more anti-epilepsy meds or increase doses because we fear the side effects will be more difficult on her than the fits.

isitme dd has blood in her tube regularly, and other ick, too. The easiest way to tell if the dark stuff is blood is to put some on a piece of white paper or loo roll and drip some water on it. If it is blood, there will be a rusty spread as the water absorbs into the paper, if it is not, then you won't see that change. Some meds will actually turn black when exposed to the stomach, but we normally don't see them back again ... lansoprazole and omeprazole are 2 of the worst, but ranitidine and cetirizine will do it as well.

Awww little princess

Ds has never had this problem before and he's been on omeperzole for since 6weeks old and peg since April
Hopefully will get more answers tomorrow
How is everyone????
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