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

Sneeze: Are school pushing the toilet training? My DS started school in pull-ups/nappies. He is now in P3 and although he is no longer in nappies he frequently has accidents ( has an irritable bladder) and needs someone to clean him when he has a poo. ( combination of he doesn't have the dexterity in his hands and his sensory probs - too yukky for him). They have been fantastic about it.

He was 4.5 when we got him out of nappies but had tried several times before. I just don't think he was ready then. At 4.5 we stopped all nappies day and night in one go and he was fine :) Maybe he is just not ready yet and if that's the case and it is being pushed, all that will happen is everyone will get stressed, including him, when it doesn't work. :(

However if your DD thinks he's ready then go for it and I'll keep everything crossed for him here :) xx

Isitme: at the ticket price!!! Think you'd def need to go for more than 10 days to make it worthwhile!!

Will you and your DH be able to be together soon? ( If I'm too nosey please just tell me to but out). Just feel a bit sad for you, cos he sounds lovely and he's ther eand you're here doing a great job but cold do with a few extra hugs. from me xx

Wow potty training. Hmm can't see it happening here in the near future lol.
My gran for my bro out of nappies by 10/11 months old. She used to sit him on potty from 6months of age.

It's ridiculous the price. Without tax it's 460 for me and 330 for ds then add all the bloody tax up and it costs a full seat!

Dh is lovely and I can't wait to see him again. The last time we proper saw each other was in October!
Just waiting for his visa they said 6months and it's 6 months on my next appointment which ideally I would like him to be with me as its results day from renogram and I was told to get appointment earlier which to me means something isn't right and I don't want to go alone. But it's just tough if I have to go alone (well ds)
If he doesn't get his visa I have to appeal and that could take a long time. Our case wasn't straight forward as I don't work but I couldn't work because I was ds full time carer. They also don't know ds has gastrostomy in as it happens after we submitted case. I was just thinking if it turns to appeal which dh thinksit will I say look at this(shows ds button) and explain his feeds, behaviour and needs and then say right do you still expectme to work? What would become of ds. No one in my family would look after him if I worked.

Thank you for the hugs gali.
X

Isitme: Poor you. You don't really need all that stress on top of everything else......hope it all goes well and you don't need to appeal. xx

isitme. no one could look after your DS as well as you so I hope the visa goes through. Could you send an additional letter alerting them of DSs gastrostomy to help your case? Its so hard when things dont go smoothly healthwise.

galli. school or nursery have not said anything about toilet training and DD and I are both where to start. Because of the speech delay and the physical delays we have no idea. He also panics so easily if he is not comfortable which makes him go stiff and makes it all worse - hence bruises down leg from trying to get him into a shopping trolley (never again!). No balance for a potty so that is out. He's nearly 4 so we should be doing something. He will be part time, split placement at nursery and reception class in september. He also needs to be in his own bed especially as he fell out of DDs bed last night. He's OK, he's tough! But DD is in the sick and tired phase of pg so has no energy to tackle anything - just wants to sleep 24/7! Think its going to be down to me to work out 'A PLAN'

Have thrown out most of nursing stuff as I am never working again! Very liberating. Retirement is wonderful if scary. senility here i come..........

I asked the solicitor who put the case together and he said we can't add anymore info after its been submitted
I did however get a letter from gastric drs to say ds was in hosp for investigations and if they need anymore info they could just call them.
His 6months are up on the date of my appointment for results of renogram. I don't want to go alone as I was told to book a quicker appointment to see consultant but didn't want t face any news alone. Which seems to be the case.
Tbh there's no other family support here apart from if I'm in the shower they will listen out for ds as the baby monitor doesn't hold charge anymore and the other one got chucked in water by another member of family.
I used to get support by family being with me at appointments but nope I'm the only person they expect to go alone with ds and his 'sn'
I know he's my baby but it wouldn't kill them to say alright come on I'll at least drop you off. We're not good enough. They said no once so I will NOT ask again. Don't care how much it costs. When I had to take ds to 2appointments in 2 days it cost over £250 getting there back on train + taxi and food. and the odd magazine to keep ds busy

I would say rant over but sadly not. In a very self pitying mood today.

X

I haven't thought too much about potty training and so I don't have much help to offer sneezesmum sorry
x

that you dont have strong family support. DD has me (too much sometimes!) and her DH takes DGS to his parents on a sunday when DD works, they also look after the crazy dog rather than DGS when needed. So we all pitch in. Not much help from her SIL and the rest of the family are really scattered. We do see her cousins for a mini holiday, and they are so lovely and accepting of DGSs weirdness

You definitely need your DH with you for appointments etc. horrendous having to take it all in on your own. fingers x he gets let in asap.
x

They've just really pissed me off lately. I don't know what they think of ds and why he's not seen as equal to the other grand kids here. My dad and 1 of my brothers truley care and other bros wife but still don't do much.
We had some mummy baby time and went in to town last minute thing and we took no pram! He was a good boy most of the time. I knew if I took pram he would fall asleep and I took him so we could have a nice quiet meal. Which turned out lovely I'm starting to think ds just doesnt like eating at home!

Your dd is very lucky to have a mum like you! I was telling dh today and he could tell how much they'd stressed me out today and he said go out and chill. Take your time dont worry. It helped until we got back home lol.

Ds banged his head on th corner of the base of the fire place step of tiles) and he has got a right bump on his head which worried me a lot. Mum said take him hosp if it's bleeding I screamed back at her 'what's the point I'd have to go by myself amyway' to try and make her feel bad but nope.

Booked train tickets for ds next appointment. It was 23.50 return first class!

I paid 27 one way last time! Price difference is because I booked one day before travelling last time and now I've booked a month+ in advance :)

X

Isitme you are not alone, I know I am old enough to be your grandmother but time changes nothing. My wonderful Ma dumped me on a railway station at 6, my Dad did come and pick me up. When I was 11 he married an evil old bitch.
I was emotionally and physically abused by her. I left home at 18 and started nursing good move!!
When I had birth children we met on her terms (infrequently) and she always found faults with my lovely DC's When we adopted our 8 she was totally disinterested. She would ring me up about HER DGS snotty noses etc. She was very rude about all my kids. Dad just kept his head down. We had no support at all (Sadly DH parents had died by the time he was 19)

You are a brilliant Mum you can do it on your own without their help tell them to piss off. I will adopt you if you want So my love hold your head up high and be proud of yourself.

Have never written anything like this before but I agree I wish sneezecakesmum was mine impossible

Btw can't you get help with fares When I take my 2 to the Heart Hosp in London £200+ we can claim it back.
sleep well all scallywags XX

well done with the train ticket bargain! moneysaving expert is a website with lots of money saving ideas, including train tickets at the moment! I am an avid fan! DGS fell out the bed onto his head (presumably as he was wriggling his head over the edge) he was fine! They usually are if they cry immediately, but if you are ever worried its A&E!

I managed to download and install a hooky windows 7 onto my sons old (but fast) computer. Took it to DDs house and set it up for DGS with his huge fabulous 22" touch screen monitor. Plays cbeebies and all sorts, like a giant ipad so he has to do lots of hand/eye/arm movement actions. Cost a fortune but got a massive discount from Dell. He loves it and I feel clever for setting it all up!

2old...typing together....I wish I could be everyones mum and help all the lovely kids and mums who try so hard. Think its 50/50 with some mums being brilliant and some so shite and uninterested. 2old you should write an autobiography, but I know you have no time. Thank god my life was just ordinary and boring!

In a way my past made me what I am and do you know what I quite like myself. I can't bear to see children humiliated and have the confidence to speak out.

We have bought DD a touch screen monitor and she loves it but needs reminding how to use it each time
DS has a lightbox and shows preference to pink !!

helpkidzlearn is a website we use £12 for a year (used to be free) but loads of games and stuff. Also cbeebies for DGS as he's officially a littlun still Pink is a very soothing colour and not just for girls!

hot milk and bed methinks x

That brought tears to my eyes.
2old I now class you as my adoptive mum/grandmum
I did really have tears you know.
It's awful here ATM.
Mother is in a bad mood because what I think anyway I didn't get her any new clothes to wear on eid but offered to buy dad. Lol. I'm a daddy's girl
And she expects me to do food shopping and buy her thick others with ds dla back payment
She asked how much he got I told her less on purpose because I knew what she'd be like oo I want this and I want that.

This thread and dh and salt (maybe outreach worker soon) are the bits of support I get really.
My friends are childless so they don't understand.

Shall I tell you what really pissed me off.
I had to do something today for 'the family' which meant leaving ds in high chair having his dinner ( well he ate a bit and chucked in floor but he was still taking bites out of it) and mother offered other grand kids food but didn't offer ds anything or even bother putting another slice of pizza in front of him ( I cut a small pizza into about 8-10 slices) I asked her why she didn't feed him. She said o I didn't know he was still having his dinner
I told ds on the phone in front of her and it pissed her off.

Good.

X

Hot milk and bed sound perfect sneezesmum!
When I was expecting if I didn't drink hot choc on a night and bath I wouldn't be able to go sleep!

to everyone here for being there :)
X

It's eid today
I'm all dressed up so is ds....
Sil and her kids are too and no one else made effort..
Hope everyone has a good day today
And eid Mubarak (just means congratulations for eid)

X

Eid Mubarak Newest grandaughter, hope you and DS have a good day you desrve it.
Here everything just the same.
Will come back tomorrow re toilet training, also a funny ward incident.

Sorry for the silence, things are "odd" here. Well, "odd" as in "not good"...

It seems like a lot of you have tons on your plates - and for all it's worth, dd is on the heels of her 7th birthday and not potty trained. There is a good book called Toilet Teaching With Your Special Child that is a decent resource. I actually have a copy of it - if you want me to transcribe it or even scan in the whole thing, I am willing to do it. Let me know.

Eid Mubarak Isistme1 wishing you as stress free a holiday as possible.

Beemom thanks for the offer. I think it's just the 'knowing when he's ready ' part that is confusing. So maybe a hint or two there. Being an only child he has no one to follow, and nursery is 2 mornings a week so not much scope for seeing what happens for other children. I'm pretty sure we can sort the physical side out and the reward bit, and constipation is not an issue. At the moment DD is concentrating on getting him to sleep in his own bed and not have an afternoon nap and not keep waking up (tall order!)

I hope your DD is keeping on a steady path, I keep saying its all the side health issues that cause the most stress.

Isitme, glad you have been pseudo adopted! It's sad your mum and family members are not very accepting. It can happen in any community though. We are all sick of people staring at DGS and I'm sure we all know how THAT feels . Sometimes I am sure the looks are just simple curiosity, but sometimes I swear I will hit someone.

So it's cut nap
Earlier bedtime
Sleep through
Own bed.............6 months..........
Then toilet training.......another 6 months

Then all sorted in time for full time school at 5!

Had an absolute shit day.

Massive kick off at home.
Brother screamed at me because I tapped ds hands as he was hitting me. I'm his bloody mother he is not allowed to smack anyone. He said I will hit you. If he lays a finger on me I will ring the police. I don't need any more stress. I've got more than enough with what I've got.

Sneezesmum your plan sounds pretty good to me hope it goes well.

Beemom hope things get better we're here if you need us.

Thank you long lost grandmother of mine
Means a lot to know I can come and rant here lol

X
Hope all is well x

Sneeze: I think if i was yourt DD and DGS isn't indicating that he is ready I'd just leave it for now as it sounds like she could do with less, not more stress :-). Re signs of readiness. They usually say that when a child becomes aware that they have wet/soiled or they are showing signs of embarrassment that they are on the road to being ready..........does that help?

Isitme: Eid Mubarak for today. At lack of family support. I can understand you not wanting to ask but was there maybe a good reason they couldn't help last time? ( Clutching at straws for you, sorry). Sorry I'm away up here in Scotland or I would help out. I know you say your friends don't have kids. IN a way that is maybe an advantage. They won't have the same responsibilities etc orhave get kids form school etc. They don't need to know how you feel they just need to care about you and if you don't let on you could do with some help then they can't help. I hate asking for help but I have learned that I nered to. TBH most people are more than happy to help. Doesn't need to be a family member who goes to the appts with you......

I am going to throw something out there Isime and you can tell me to bog off if you like, but have you considered approaching youe local LA and asking to be housed? It sounds like living with your family is just piling on the stress. Stress you don't need. I know the idea of moving out on your own and how it would all work out seems stressful too, but I think in the long run you would have your independence and space and time to enjoy your life with your little man ( and DH when he comes over). for you xxx

2old: at your childhod. You obviously have a strong spirit and a huge, loving heart . Lovely post to isitme

As I have give dh case in he will be subject to immigration control and when he gets here we won't be able to stay there (as far as I'm aware)
I'm going to take the offer up I think. Ds doesn't need the stress and neither do I. If they could do me a council house/flat and they did rent until dh came then once he's working we could hopefully afford rent. When he comes one of my benefits will stop but as far as I'm aware ds will not.

It's just been such a horrid day :(
Mother just can't be assed when it comes to me and that's a fact. She will do Anything for the others but not me n ds.

Oh well. At least I've got the roof over our heads
X

Sounds like a good idea for isitme to see if you can be housed. If not now certainly when DH arrives. It does seem like a lot of stress at the moment and not much support. It was not fair of DB to shout at you. It's a difficult situation for sure

2old deFinitely has a heart of gold

DGS has no idea when he is wet so probably leave it til we sort out the sleep. Trying without a nap but he is currently fast asleep on floor......sneaked of to sleep when no one was looking. Stirring now....