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

isitme: I think she is talking pants! As long as you flush it will be perfectly ok. And if you use warm water that als will flush any fat left sitting in the tube. Omeprazole is more likely to be a blockage problem to be honest....

She said that the tube itself won't become blocked but the bit inside will gather sediments and will become blocked over time.

Well tubes need to be changed for any child. Sorry can't remember if it is the sort that needs to be changed in hospital? But if he gets a button then in our area the protocol is to change it every 3-4 months (which we do ourselves) so as long as your ds's are lasting that sort of thime, I can't see that it would be a problem.

Galli Has your DS got a named syndrome tell me to mind my own business but my medical mind is clunking. Poor little chap but am glad he is so happy.
Isitme, what I can't understand is both our lads were born with no problems, my DS was meeting all milestones at 8 months. Then he had meningitis which completely destroyed his eyes and ears,and severe CP and epilepsy I can understand that. Feeding was always an issue which I put down to his cp. Due to being so underweght and reflux it was decided with no investigations to give him a peg and a fundoplication
He went to theatre to have it done and they found a minute stomach in his chest cavity. Were unable to do a fundo stomach too small so had a jpeg.Feeding has been a doddle since but he is allowed nothing in his stomach and it has to be aspirated 6hrly. Just wondering would the meningitis have caused this and reading about your LO would there have still been problems
with feeding without the meningitis Just a thought.
Hope you are all wellish and have fewer problems today xx

Took so long to do last post missed many of last posts. Totally ag.ree omeprazole is well known to block tubes we use liquid very expensive short shelf life but managable with a good pharmacist

"old: A named syndrome....I wish. Nope afraid not. He's had every genetic test there is and is now part of the DDD study. He's been discussed at global genetics meetings and there doesn't seem to be another one of him in the world.

Doctors are either fascinated by him or terrified....... even his blood chemistry does funny things, usually the opposite of what it should and they don't know why. Oh and his pancreas is a funny c shape and wrapped around other bits and bob, has extra arteries in his kidneys and one major artery missing (forgot them fromt he list). Completing forms is a major underetaking.

And he's a happy chappy other wise. Wow it's incredible what kids go through and they still come out smiling!

Ds is on the suspension too. I made sure of that. Gp wasnt happy about it but we had the backing of our local pharmacy. They can get it in next day! Wonderful as this time my stock got low and it wouldn't of lasted til monday! So I would be pulling my hair out without them!

I do know that when I was giving food down peg his tube became lined with food (which concerned me) but if you rubbed the tube together ( which scared me as Im afraid I would damage tube) the crap would come away.
X
Hope everyone plus lo are all good
Galli sorry about the email yesterday I didn't want to disturb you
X

Hi, It's no problem. Can't always say I'll reply straight away but do feel fre to email whenever.

I did reply on here though...did you see it? Your email was straight and to the point....:) Did you send it? What respnse did you get?

Hope everyone is well today. DS is at gran's house ( trying to let him go a little bit at a time as usually I am there too.....bit of a control freak I am!!) I am currently skiving from my huge ironing. I HATE ironing with a vengeance, but unfortunately I like everything to be ironed........xxxx

Thank you.

I sent her the full post
Including the bit to 2old about my gran fostering lol.

She just said I advise against it due to sediment build up and what not. Shes coming over on Tuesday with salt.
So going to see what they say. He will hopefully be weighed and they will see his weight loss.

I'm just worried everything he is going through will have a lasting effect on him mentally.
He's such a nervy little boy.
X
How's everyone's lo?
X

Galli ironing me being a poor OAP pay for mine to be done but do have an 8 bedroomed house to clean (not posh just a tatty old Victorian terrace)
Isitme your email episode ticled me pink!

OOO tickled
hope you are all well.
Well done Galli for letting go it is very hard. Me control freak too.
Isitme meant to say am so glad you have a happy chappy DS sadly gets neuropathic pain and is on heavy medication.
xxx

I meant gallis ds
Does anyone's lo go to a sn play group?
I was thinking about taking ds.
X

Let go? Lol I don't know what that means
no one here will take ds for longer than 10mins.
He gets left out. So I'd rather have him by my side.
When his dad is with us it's different. He doesn't leave his side
X
Hope everyone is good x

Well Ds is still at mums and I haven't even phoned or txt to see how he is.....how good am I. I did send written instructions though. The fact he is now 7 and mor eunderstandable ( but not always) in his speech helps, cos I know a) he will tend to keep folk right and b) he'll tell me if anything went wrong. Only thing he won't do is remind folk when it's time for fluids/meds/ of food since he doesn't understand what hunger or thirst are!!!
Ironing is finished....ust have to put it al away now. Hubby is doing some plumbing work upstairs so the putting away will needs ot wait and i can have a wee rest.

Hope everyone's Saturday is going well.

2old.....I am jealous. Someday I will have someone to do my ironing. When my in-laws come to stay (they live in Holland), MIL does al my ironing and i'm ashamed to say I don't iron for ages before they come........I save it up for her

Get some rest then! Ds is chilling and you need to chill too.

We took ds to the park.
He screamed when we took him out of the pram but I managed to calm him down. Within half hour he was playing himself!
He was on the slide, in the little house thing and jumping in muddy puddles!!!
He didn't want to leave lol.

X

Hope everyone ok. Having day off today, no idea what to do with myself anymore. So used to working 3 days and helping with DGS 4 (physio etc) I'm lost now I've retired and DGS in nursery 2 days. Being busy 7 days a week for 3 years then sudden stop!! No idea what hobbies I used to have - very

Sad about 2old and gallis DSs, don't honestly think I would cope with all that stress. Can't stand being in hospital, can't even contemplate bank nursing any more. Have managed to give the boy my odd cold, and he is snotty again, so it's back to the snot induced puking!

Isitme. So nice to hear DS had a happy day out. It's odd that despite all the difficulties these lovely set of boys have they smile and have such happy natures - i'd be a grumpy old cow! . Xxxx

Sneeze: Hope you had a relaxing day off and didn't fret about what you should/could be doing all day.....

Isitme: Great that you had a happy day :)

Well no disaters with DS at Grans, although she did forget to give him his snack ( He got his meds and lunch so not too bad). He is hope alive and well and happy :) I really miss him when he's not here. People talk to me about respite and having him go to sisters/my mum for overnight but I can't bear the thought. Sending him away overnight is a major operation and actually costs me more energy before with preps and then energy when he's away worrying and usually even more energy when he comes home puking cos he's not had right meds/food etc........Just not worth it for me.

TBH, our life now feels much more relaxed and easier than ever. Up until about a year a go he psent most of his time in hospital, we couldn't plan anything and if we went anywhere usually had to leave early and go home via hospital. In fact a few years ago we were at a New Years Dinner Dance and ended up in Sick Kids at 1:00am on the 1st of Jan. Nothing like starting the year the way you mean to go on eh? And that was exactly the way that year went on!!

People just don't seem to understand thet I love spending time with DS and that I don't need a break from him...... he may well need a break from me right enough...lol. My sister just doesn't get it. He kids are babysat for whole weekends almost every weekend!! I can't understand that, but hey, it wouldn't do it we were all the same.

How about you guys? How are you with letting your children go away overnight etc? Do you feel you need the break? (completely understandable btw, just because it doesn't suit us)

DS hasn't stayed out overnight with anyone, without us, since 2007........today was the longest he's been away without us for a very long time :)

2old, you sound a bit like me. I think that deep inside that I am worried that Ds will die and that I will have missed some of his precious life.....don't consciously think like this but I do think that's behind my control freakness and wanting to spend all my time with him.Well the controllfreakness is mainly to do with keeping him alive and safe and believeing that no-one can do it as well as I can.... Poor DS. I do let him take risks and live life to the full btw, just prefer for me to be there when the risks are taken. Not happy for others to take that on.

Anyway this has turned into an epic, sorry. Been in a terrible mood this afternoon and really grumpy with DH for absolutely no reason. Not sure what's going on, but feel better after that we moan/story.

Have a good evening everyone and a happy Sunday. xx

Oh Galli you have summed my feelings up so well. Because he is so vulnerable not able to move deafblind I am so scared he will die when I am not there, He goes to respite with DD so I can recharge my batteries and I feel so guilty I jump every time the phone rings when he is not here. Also some mornings if I can't hear him I dread going in his room. Fortunately he has a brilliant paed and understands my concerns. Apart from paed I have never told anyone my fears. But have to keep smiling for the others and deal with trouble when it arrives. Luckily I am usually upbeat.
for listening

Meant silly old fool

hugs to the both of you

I understand where your coming from. Ds isnt as ill as your dc but that is my worry too. If he's with me I know in looking after him and he's safe. He's 2 in sept and he's never spent a night without me. The longest he's been without me is 2-3 hours!

Don't worry about having a good old moan it's healthy!!
X

Just like I was saying......DS got up this morning and the first words out fo his mouth, 'I was sick yesterday with Gran'.......did anyone think to tell me , no, so I couldn't give him extra fluid, which I would have done if Ihad known since he missed his (BD) snack too!!...........

We are all completely justified in our feelings.

2old ....hugs to you.

I have shared my fear of DS dying with friends and they are great about it. However when I told my sister that I had essentially planned his funeral ( music, what kind of coffin he would have etc, just in case) she immediately phoned my mum and told her I was having a nervous breakdown!! In fact I had it planned in my head so that if the worst ever does happen, then I can spend his last hours actually with him and not worrying about how to arrange a funeral!!

In general I'd say my family just don't get it. I don't think this is uncommon. They see that he is doing really well just now but don't realise what hard work it takes to keep him well and that he is still in a position of very high risk of a potentially life threatening injury/infection.......I have given up trying to explain to them.

I have one friend who if she hears DS is in hospital just cannot bring herself to phone/txt etc because she is worried he'll be dead!!

Luckily I don't think about his demise on a daily basis and just get on with life and making it a happy life for him :)

Hope you can all have a happy day today :) xxxx

to you all. You are the only people who seem to understand my fears as well as my "bestest" friend who was my DS's now dead "girl friends" mother. Amber died on his birthday how spooky is that? But I am sure apart from you she is the only person who understands my fears. BTW she has another DD who is the same as Amber.
Hope you are all well and will support you all if needed. Unless of course I am 2old
Love to all x

I'm very glad I made this thread ohh yhh
I'm happy that we can support each other.
I hope gallis ds is better today

2old your never too old :)
You have words of wisdom and so does galli
And everyone else
X

Istime just read your post about the sediment in the tube and remembered a tip I got from someone at vygon. Flush with a syringe but instead of doing one long slow push on the plunger, do it in a stop start movement which sets up a bit of turbulence (sorry can't think of a better word) which helps can any sediment off.

We all have our own wisdoms..... each and every one of us. :)

2old... for you :)

People talk about the poem Welcome to Holland....have you heard of it? I found it accidentally when I was actually living in Holland.....lol But how true it is. see it here www.our-kids.org/Archives/Holland.html. I cried the 1st time I read it.

Isitme: Hope you DS is feeling much better than he was. How is he doing now? Any more gunk from his peg? What about his uti?

My DS is fine thanks. Puking isn't anything out of the ordinary for him. I just like to know so I can give more fluids.... if he sits in a particular way after he's been fed he pukes, if he lies on the floor ( which is his prefered way of playing) he pukes, if he runs about too much after food he pukes......getting the picture. We buy sick bowls by the 200!!! They are great for arts and crafts :)

How has your weekend been? I was really pleased that the suh came out for a bit today and I managed to plant some wee plants I bought over a month ago and were still in their polystyrene containers . Back garden now looks lovely

Starfishmummy: That's great advice ! I never thought about that, but when DS had a port-a-cath ( permanent access central line) we had to do this when blocking ( flushing ) it off. :)

See another wisdom.....we should write a wee book. Our little book of special mummy wisdom