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

Thats brilliant isitme. It's early days yet, so hopefully he will start to join in and play with the others when he gets used to it.

Hopefully
Hows everyone doing?
X

DGS has chicken pox. Only mild so far and he's not bothered. A child with CP with CP

Yuk ...to the chicken pox. Hope they stay mild and opass quickly. xx

Sub: Hi and welcome. Teddy sonds like a great idea. Also if you try and be quite matter of fact about it, it may help. xx

Isitme: That's fab news about playgroup. Here's hoping he'll just enjot it mor ean dmore and he becomes more comfortable with other kids. DS is rubbish with strangers, particulalry childre. I think it's because they are so unpredictable. If he's thrust into ann environment with lots f strange kids he will either separate himself an dplay alone an dsceam blue murder if anyone invades his space, or he will be deliberately naughty so he will be removed! We now anticipate this and encourage him to remove himself without being naughty, or we step in. He is 7 though so trying to help him to help himself a bit more. xx

Very funny sneezecakesmum hope he is not too itchy.
Isitme so glad your LO is enjoying playgroup but don't forget it is a 2 way thing, the other children benefit too.
Sub welcome, Teddy brilliant idea but a word of warning DD2 had naso gastric tube did likewise with tube on Rabbit, medicines all lined up in syringes phone went wretched child managed to to put all meds down Rabbits tube what a sticky mess.
Having a stressless W/E so far, went to friends birthday lunch (my age) We just had to go on bouncy castle we should know better at our age both fell off showing our knickers to all and sundry both DH's walked off in disgust rest of families highly amused.My birthday tomorrow hoping for zimmer frame
Hope you are all well X
Only 2 hosp appts this week 1 for DD4's funny bottom

Happy birthday 2old
+ from all of us.
Hope you have a wonderful day!

Awww poor lo. Glad he's not got it too bad!
We have chicken pox to come! Not looking forward to it either!

Galli- poor little man I don't blame him for how he behaves, he's been through so much as a child. Not wanting strangers near him would probably be natural now for him.

Hope all is well
X

Happy birthday 2old - like me no doubt counting backwards!

I would love to go on a bouncy castle or trampoline but can see broken bones looming. Used to go ice skating weekly a few years ago but now too scared of falling . old age def creeping up on me! Not really bothered! DGS spotty but not bothered either, lucky so far.

DGS also scared of strangers most of the time. Knows that sometimes they do nasty things, like pull all his teeth out. Just think it is a sad fact of life for SN children who are pulled around and made miserable in a lot of instances. He was good at the botox clinic last week. Just frowned when they were moving his legs around. Luckily no need yet for botox

isitme. hope the nursery play encourages DS to see other children eating and want to do the same. Boring little conformists at this age

Sneezecakesmum thanks I was counting backwards until I read a card from friend "ageing is inevitable----maturing is optional".
Hope all is well with you and all your little scumbags
Do you think this may be deleted I hope not as it is meant with love.
Chat with you later XX

"old: Sorry I missed your birthday yesterday. I wasn't on at all. . xx

Hope everyone has a good week. We got a bit of a surprise ( shock ) in the post. Copy of leeter from Cardio to paed and it states that DS may have arotic stenosis!! ( narrowing of the aorta, not good. Will see Cardio end Aug so will know more then. We were told his heart was fixed when he was a baby. It may explain his recent very low heart rate. ( frequently ,60bpm even when up and about)

Off to see my sis and her wee boy today. :)

Gallivant. Hope all goes well re cardiac problems. Poor little DS does not need and more heart ops. Or any more ops come to that

Awww hope he doesn't need more ops but finds out soon what is wrong.

Dh thinks ds has lost weight.
Hmm I dunno I see ds everyday so can't really comment.
He's 2 In sept and his 9-12 months old clothes fit ( or fall off him).
Got salt and hv tomorrow.
Let's see what they say.
X

Galli sorry about your DS's cardiac problems try not to worry too much (what a stupid thing to say) DD2 and 3 both had heart defects but not aortic stenosis but I believe they can put a stent in to hold the narrowing open (I may be speaking out of my arse as my poor old memory is failing )
However I remember a nursing colleague discovered she had this when she was pregnant and had it sorted after delivery and is still fine and is even older than me,
Thanks for birthday wishes
Isitme try not to worry too much about weight as an old fart my thoughts are with my 2 scumbags are doing OK if they have healthy hair,strong nails and good skin, Paed agrees with me not so sure about dietician. Also thanks for starting this thread
Sleep well and good dreams X

It's my pleasure!!!
Well his skin is dry
His hair is thick and coarse
His nails have White little clouds in them. Last time I checked.
No one one seems to be bothered.

Hope everyone sleeps well x

Isitme: I find dieticians seem to get their knockers in a twist more than others.........maybe next time they take bloods you could ask them to do a nutritional panel, then you'd know if he is lacking in any vitamins etc which could then be supplemented? Will HV weigh him for you? It could be he has taken a stretch in height and therefore LOOKS thinner?

Thanks folks re cardiac stuff. DS has a very complex heart anyway and this is just something to add to the list. Re surgery we will def have more surgery on his legs/feet at some point and there is also a possibility that his left foot will be amputated at some point. Don't be shocked. It would actually be a good thing. He has really complex clubfeet which just end up returning to original position after surgery. Right food is bad, but better. If they amputate he will get a fully working prosthetic.........and for him that would be great cos he's never had a properly working foot :) So he will have many surgeries I'm afraid.

Come the end of August it will be 1 year since his last surgery. For him that is amazing as he's never gone 12 months with no surgery before. So although there will be many more, they are at least less frequent :) His poor wee body is a jugsaw puzzle of scars...

Hope you get on ok today with HV and SALT today Isitme. xx

The lady from the wheelchair shop is coming at 10am with a variety of chairs for DS to try. He has outgrown his last one and he really needs a lightweight one. His NHS chair is so heavy he can hardly move it himself, which kind of defeats the purpose. xx

Awww hope you get a better wheel chair!

It's good he's been a year without surgery.
My nephew has really bad clubfoot.
He has 2 big toes and 1 middle and 1 small. No side bone. And his big toes are curving in making it hard for shoes. He is in Clarks shoes ATM as they have more room at the front. It's also 2 sizes smaller than his other foot.

Salt said dummy needs to go as ds is vocalising with it in an it's not good.
Hv knew nothing on reflux or peg feeds or fundo.
I and salt told her.
My sil made ds dinner and he ate a few bites in front of them and as soon as they left he screamed and chucked it on the floor!!

X
Hope everyone is good!
X

Aw, at least he has manners...lol :)

Gallivants. Image of your dietician getting her knockers in a twist . It's unbelievable that kids take all the surgeries in their stride while their parents have nervous breakdowns. It's crap tbh. Have you looked into charities for funding a nice wheelchair? Cerebra at the moment have about a month to get the money so a short waiting time. Whizz kids?

Isitme. Does DS have behavioural issues not related to pain around food? Sounds a bit like some naughty toddler stroppiest going on as in playing mum up over food? DGS will eat for DD (savoury dinner type food) but no chance with me. Today he had wottsits and choc buttons for lunch

The peg came into its own over these past days with the chickenpox as he got a bit dehydrated with the temp going on. Loads of fluids down the tube, job done!

Atleast these pegs are useful lol.

I don't overly think it's behaviour as he we were once told that if a child doesn't eat what you make but eats junk then that's behaviour and he'd say no to both.
If he's refluxing or 'playing up' ( about to get pain or fustrated or scared) then he won't eat. Which is round about 2/3 meals.

Obv they saw the floor was being fed too. But the fact that he ain't some made me Proud
Hv didn't know what fundo is
So salt was pulling faces behind her back lmao being very handy.

Salt talked about speech more than feeding.
She was saying we need to know if he understands single words first etc.
X
Night everyone x

Hi All
Hope all is well in Tube Land
Galli may I ask what heart defects your DS has, DD2 had a Fallot's Tetralogy
and a complete Atrio-ventricular defect now repaired I think she was virtually an Eisenmenger Syndrome she is doing quite well now she has a pacemaker.

Busy few days blood tests, new hearing aids and today dd4 "funny bottom"
clinic Outcome she needs a bloody colostomy can have more major surgery to repair the hole in her fanny in 6 months time and then will need further op to reverse the colostomy. My gut feeling is to just to leave her with a colostomy as she will never be toilet trained. Be interested in your views,
Take care

Aww poor little princess.
If you don't think she needs the extra surgery no point putting her through it. I'm sure someone with more knowledge will come along soon
X

2old. So sorry about the colostomy. I guess she's got some kind of fistula. I guess you will be able to make a judgement about the colostomy when it is a fact and can compare with and without. Isitme has a point about unecessary surgery. I hate it that these kids have so much crap to put up with on top of everything else.

DGSs chickenpox is crusty so was out on his trike again today. Saw community pead for statement....depressed as hell at what he can't do

sneezecakesmum why oh why do they zoom in on the negatives. When I was a student nurse (1899) it occured to me EVERY child has a beauty spot and it is up to us "them" to find it if "they" can't they are in the wrong job..Don't get too down about your DGS, he will reach his full potential with his good family around him.
Stuff the professionals.We are fortunate I have known our paed for years and guess what she listens.

Re DD's colostomy my gut (excuse pun) feelings are she will never be able to control her bowels due to constant diarrhoea BUT maybe she will be able to control her wee. As her diarrhoea is constant with a colostomy no more sore bums.

Hopefully a good night to you all. Swet dreams xxxx

SWEET DREAMS UNLESS YOU ARE MENOPAUSAL

I really do admire your attitude towards everything.
I think your such a strong mum!!!
I want what Ever your having

Took ds to playgroup again today.
He was a little less impressed.
He isn't one to cuddle and he wanted a cuddle and he was just sat there on my knee for a min or 2.

He's got playgroup tomorrow too.
This Is a different place. Let's see what happens.

help please
He had one red spot just under his peg site lower abdomen.
That was this morning
In the evening there's more spots. And Its slightly gooey.
I rang community nurses. They finish at 8pm and I rang at 7.20
No one picked up so i left a message.
No one got in touch with me either
:|
Not
Very
Happy
As you can tell.
X
Hope everyone feels better than I do!
X

Sneezecakes.....my spelling will get me into trouble...oops! We don't have statements up here in Scotland and I do not envy you in the slightest. Sadly for statements, DLA etc we need to concentrate on thew stuff our kids can't do in order to prove they meet the criteria. Very depressing. Maybe you can make tomorrow a 'look what you can do' day ;) xx

2old : Poor DS4! I have lots of exprerience of runny poo. Ds had this the entire time he was on formula, regardless of which formula it was. I thought it would always be that way and he was incontinent. SInce changing to Blended Diet hisa poos are now 'normal' and he is mostly continent. A few oopses now and again but nothing much!!

DS had Double Outlet Right Ventricle( similar to but less common than T of F), ASD, VDS and non-closed ductus arteriosis. He has a patch but still has a small VSD which can be heard as a murmer. There is not talk of him possibly having aortic stenosis though so we'll see what that brings :(

Totally agree about unecessary surgeries. I think that docs often don't actually see the whole child, only the little bit of the child they are dealing with. Everyrthing crossed you can get her bms firmed up and avoid the surgery. xx

Isitme: Hope nursery goes well tomorrow and he is a bit more confident. Re his spotty tummy.....could his peg be leaking and that's what the goo is? If so then that can cause irritation. Luuk often has a litle rash on his tum which turns out to be nothing. Is he well in himself? Not vomiting any more than usual? If there is anything wrong with Luuk's site then he tends to vomit much more. Give the nurses a call tomorrow again and get them to have a look and maybe do a swab just in case. xx

I won't be around til end of next week as we are away for a few days. Off to Gullivers World with Dreams Come True Charity, who are having a weekend there and then on to Thomasland for anothe couple of days........really hope the rain lets up!

Hope everyone and their kiddiewinkles stay well. xx