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

I am going to change once he's on an even keel.

We are barmy. All of us except 2old. :)

We are here for each other. Doesn't always have to be gastrostomy related.

Galli hope your having a good time.
Has anyone heard anything from
Kal and tooloud?
There lo's where ill last time we spoke.
Well wrote lol.
Hope they are On the mend

I've been up since 4.30am after sleeping at 12.30 til 2 because of ds temp then little sleep until 4.30.
I had a bit if a power nap at 4pm
Hope he sleeps!
Night all x

It's standard practice for a&es to notify all visits to Health visitors so don't worry too much about that. The good health visitor might be contacting you to see what support they can give.

Talk to your community nurse to see whether there is an alternative to a&e- in our area there used to be a children's assessment unit attached to the kids ward. Normally this was for gps or the drop in centre to refer poorly children to, but children known to have medical needs could have open access and just turn up.

I also agree with sneezecakes - that your gp doesn't sound great. I don't think you necessarily need one who is an expert on your son's condition, but one who accepts when he (or she) is out of their depth and will refer you onwards as required.

I know that They notify them if visits but he was talking about the fact that ds has been so much.
The only reason he's been so much is because he gets ill quick.
It happens a lot on the weekend so yeah gps are shut.
Sometimes you know your child is ill and gp would send to hosp ( because of his background) and I would rather just go straight to hosp.
The hv even said when your child is ill and you know they are ill ill take him to the hospital. The only reason he has survived is because of my persistence.
With meningitis we went to see gp then upto hosp then sent home then back upto hosp over course of 48 hours.
I knew something was wrong and I was right.
With his feeding the gp did not agree for ds to have meds or peg. He said I was being forced to feed him family foods. He did nor understand the concept of baby food made him more sick If he ate it. He couldn't understand that ds is scared of a spoon. But he wouldn't a lot of people don't understand unless they've seen it before.
Salt said a person who enjoys food cannot get their heads around babies who are scared of food because of pain.
I just want ds to be on an even keel before we change.
I'm scared of changing just in case I don't get his omeperzole suspension and if they are worse than gp.

Ds is responding well to antibiotics (thank God!) so he's a little better in himself but he's had nothing more than a few crumbs (literally) over past 3 days. he's being sick 2 out of 4 feeds.

Hope everyone good x

Oo we are waiting to see his general paed and I'm going to ask for open access then. He has appointment end of next month.
I rang and asked for earlier one but she's on holiday this month
X

Well done in getting your appt. August is approaching rapidly!And it is still freezing.
Open access is brilliant Isitme it is like a big cluddly blanket The only disadvantage is we are nearly 30miles away but school find it a godsend. Has anyone suggested Continuing Health Care Plan, we no longer have any SW input All respite care and equipment is funded by the NHS. not social services Don't know how it came about I suspect it was instigated by paed. It is a lifeline.
Hope all are well.

We don't have a sw.
I do think it may help get all the relevant parties involved.

He woke up this morning and didn't recognise me or his grandad.
His grandad came in to our room as ds was screaming and he thought that if he took ds downstairs to watch tv I would get a little more rest lol
It did worry me as he didn't recognise me. He settled after about 45mins.
He sat in the corner and he was holding knees rocking backwards and forwards
X

Poor little boy and you and Grandad it must be awful he is so young. Don't know what to say. xxx

Poor little DS isitme. I am sure it is because of the temp that he didn't recognise you. At least he wasn't hallucinating that is scary.

Dgs is having an afternoon nap. Waiting for his dad to get home as mummy is working a 12 hours shift. He's stirring now. No he's not! If he is not properly 'slept out' he does horrible myoclonic jerks, half in and half out of sleep. We are sure there is not an epilepsy element but because of his history of vacant episodes and fits at birth it makes me feel sick. Dozed off again

Glad he dozed off for you!! Bet that's scary to see.
Ds is a lot better today.
Still serious at times but a lot better :)
I've been trying to establish if he does understand words. But it seems not.
He is very Fascinated by mr tumble. He's really watching what he's saying with signs.
X
Hope everyone is good
X

Mr tumble is brilliant! The first sign that DGS 'got' things was when mr tumble pretended to hide behind the curtain by just leaving his shoes showing underneath them for lord tumble to see. DGS burst out laughing when lord tumble realised it was just the shoes . He was round about 2 at the time so it was very reassuring.

He tries to talk but gobbledygook comes out! The Lingo show asks children to 'say...' (in french or mandarin!!!) and he tries to say something!

You will find your DS understands a huge amount before he speaks clearly. DGS managed to say a naughty word very clearly, only it was at a funeral! It was us that taught him it though as toddlers always pick up and say naughty words and it was sods law that he actually did pick it up! Hasnt said it since!

Aww I love it when they laugh hard.
Ds has got bruise like spots under skin of foot.
He's got one on his arm too that doesn't blanch. Unlike the others.he's got gp appointment at 5
X

Very tired.
Sat in childrens ward.
No bed sat in waiting room.
They took bloods. He's got non blanching rash. But no temp.
If bloods are good then home if not iv.

Daaaammmnnn I'm tired
X

Everything fine except White blood cells.
Hes had this prob in the past.
very tempted to visit dr google
I'm going to try and sleep now we are home.
X

Hope you both managed to sleep. You must be shattered. The constant illnesses would really get me down. DGS gets lts of bugs from nursery mostly snotty ones that make him vomit all the time (mucus in his stomach). Tat when we thank heaven for the gastrostomy!

It does come in extra handy when lo's are ill because most kids don't eat then but we can keep them topped up :)

I'm in a bit of a dilemma.
There's this woman who lives down the road. Shes single mother and has a young ( just a little older than ds) autistic son.
She is arabic, no family here and very poor but won't take anything from strangers. She was short 2p for milk and local shop keeper said it's fine pay it next time and she said no. She wanted to put 50p on gas card.
She takes her lo out in a standard stroller which is now broke( I went up to her house to offer some food I had a good excuse too it's ramdhan next week and Muslims offer other muslims food around this time. The wheel of the stroller was in the front garden)
I want to help but don't want to offend her. We do have a few common factors ( religion and lo's and she's alone im not exactly alone but partner not with me) so I thought I could try and make friends with her and our lo's? Language is other barrier too.
Wuud?
I've seen a stroller for £20 I was thinking of buying it and just leaving it outside her house with a neighbour from behind curtain to make sure no steals it?
X

Sorry I've not been around.....Isitme, poor DS. Hope he is much better asap. WHat a kind, thoughtful person you are thinking about your 'neighbour'.

I am not sure how you can help without offending her if she is so absolutely set against accepting any kind of help. I do think that befriending her first and foremost would be a huge help to her if she is open to it. Feel really :( for her and her LO.

xxxx

I was successful yesterday. 3rd time lucky.
She had managed to buy a petit star pram. I took some food over too and when i opened the container the little boy said wow.
He didn't eat it as he has got a swallowing difficulty and she is using difflam spray ( dont think he has been to gp for it)
As he's autistic the only thing he will eat is 'too much rice little bit meat or chicken'
He had round about 4 toys which consisted of a football, 2 largish cars and it looked like a broken toy. They dont have a microwave or Hoover by the looks of it.
It was round about 6/7ish well I got back at 8. No lights were turned on and no heating was put on ( it was cold his hands were freezing)
When I said bye to him he wouldn't let me go he kept crying.

He looks like a fatter taller version of my lo.
He had a bruise near his eye ( on the outside corner)
Curly hair, light skin and a dirty face.
He babbled like ds too. Really wanted to bring him home.
I told her we give food to other Muslims near ramdhan and during ramdhan. And she believed me
X
Galli did you and ds have a hood time?
How was the weather for you??

X

I gave her my mobile number and I said if you need anything give me a call. She said she had no credit.

Isitme, well done for yesterday. I know you won't want to hear this but if there are real concerns about this little boy's welfare ( and it sounds like there are, re being cold, food) then she really needs to accept help and if not from friendly folk then official services. I can't see her asking for help so it may mean an outsider making that step and contacting SS.......they are there to help, particularly vulnerable children. Hope she and her DS are ok. Maybe if she will allow you to build a friendship she will accept that she needs and is entitled to help.

Our hol was fab, thanks for asking. Weather was for the most part kind. We only got rained on 1 day so that was fab. We stayted in Premier Inns rather than hotels and it is just so much easier. More space, clean etc. And we had bought an electric cool box so was much easier for Luuk's food. xx

Isitme thankyou for trying to help it is avery tough world for some people.
Agree with Galli but tread carefully it would be awful for her to lose you as a friend, she seems very proud and dignified like all Muslims I have met. Perhaps you could ask SS to be gentle (except if you feel child is at risk) Wish I could help.
Galli glad you had a good break Totally agree about Premier Inns basic but always clean. We always use them when we go to Manchester for DS's Cochlear Implant appts.
Isitme hope your LO is OK

The local shop keeper know about her and I think we are going to pay him to put more electric and gas on her payment cards and not tell her. She wont really click on that it's happened but it will be a bit of a weight lifted of her shoulders.
She is doing well in trying to look after him I think he isn't starved as he looks like a healthy boy but I think she struggles to understand his needs.

I'm taking it slow I've offered help and hopefully tomorrows turn out will be good.
I'm planning on sending food over every other day in ramdhan for the both of them so it helps a little bit.
I don't think she knows what benefits she's entitled to so tomorrow I will do my best to explain that and maybe print off a few forms and help her fill them in.
It might just of been that it was cold as they had just come back in from buying a new pram that's what I hope

2old do you go to Manchester royal childrens hospital with ds?
They are brilliant there. I'm here too in Manchester lol.

He's better today. I found a pop up book from my younger days (10+years) In good condition. Ds loves it. It's all about animals in Africa. He tried to get into the scene and sat on the pop out bit!!!

He pointed to the elephant and giraffe ( the toys he holds all day everyday!)
And also we got 2 new cats today. 2 Siamese kittens and he loves them. He was trying to give them toys to play with lol and he even stroked them and said chhhucccuu lol he was copying me!
Very satisfying day indeed!
X

Hi Isitme yep we come to Manchester but to the The cochlea implant centre Ellen Wilkinson Building we find them fantastic, no one else would take him on GOSH, Addenbrookes or Nottingham so we have a 5 1/2 journey stay 2 nights in a Premier Inn and then home, as his Lordship doesn't enjoy travelling long journeys and I do not like sedating him It is costly for 7 but am very grateful that they cared and saw him as a human being.
I bet you are excited about the kittens I love Siamese Cats.
So glad you are having a good day.xx

Isitme. Hope your new friend accepts your kindness and help. So exciting getting cats. I love cats, DH hates them so no cats for us. :(. Glad Ds is perked up enough to enjoy them. Here's hoping he feels better and better. Hugs to all who need them. xx

Awww bless. That'd what we ask for!

Ds is now in bed :)
I've managed to have a bath.

I saw on an other thread on sn that a lady had done CHAT assessment online.
I filled it as true as it could be and ds score was between 119-121 and it said moderate pdd/autism.
I have seen a few things which makes me think yeah that sound like him but sometimes I think no.

Like doesn't like strangers, crowds, really bad temper tantrums, I think the delayed language and the fact that he did used to say 123 and ready steady go but no longer says it.

I will talk to hv I think see what she says
X
Hope all are good
We all deserve !!
X

Def worth mentioning to HV Isitme. Can I ask where you found the CHAT assessment online? I can't find it.

Glad he's asleep. xx