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

Yup and he tolerated his feed after and went to sleep too!
He's going to have tea now. Then yoghurt and then leftover avocado blend.
He won't eat much if his tea.
X

Hi,

Isitme.....HI again. The oils/seeds etc I add are measured out in the recipes I gave you. Without a really powerful blender you may struggle with the nuts and seeds tbh. The amounts I have just 'evolved' in the beginning as I was trying to find my feet with BD. If you are going to go for the idea of just blending what a typical child of his age would have and then maybe adding a little extras then just experiment. I have had to throw out some pretty awful blends in the past. Over time you will just get a feel for what is right.

Glucose I just sometimes add to his fruit juice simply for extra kcals. Other than that the glucose isn't nutritious :o. Agave is a liquid 'sugar' which is low GI and helps to prevent sugar spikes. Fructose (fruit sugar)is another lower GI than normal sugar, but I don't use it much anymore cos I read too much can cause heart problems!

I only use jars/pouches as an emergency ( always have a couple plus EVOO in the car) or when on holiday. Just saves trying to take the Vitamix with us since we already have enough extra baggage with everything else :) If he is getting the balanced nutrition the dieticvians say he is, I figure a week here and there with less than perfect nutrition won't do him any harm :)

Will your DS be keeping his PEG or weill he be getting a button? With the type of end your sonhas on his PEG, I wouldn't worry too much about blocking the tube as any blockage is likely to be in the tip of the syringe :)

I use a vitamix blender. Its blenders anything to liquid. Very powerful. When we did blends I didnt really faff around with nutrition. Just blended whatever a child of that age would be having for tea anyway. So a child portion of what everyone else was having.

I think I'm just going to stick with what an doing don't really know what that is lol
Just fresh stuff with the added umf of oil or something.
I heard you can blend bread what about egg?
Oo galli I read your thing for the dietician. Omg its brilliant
X
Kal thanks I think that's like half of the idea plus half of gallis idea
X

Egg blends really well.......:)

I would love to just do whatevr we are having and maybe someday. If you can do that then it is certainly the easierst way of doing it.

We are going to see MIckey MOuse next November and I had been reading how great they were at Disney of people have allergies and that they can puree food for people too, so I wrote to them and it seems that when we go next year my DS will be able to choose a meal or 2 from the menu for the 1st time in his (he will then be 8) life :) :)

Hope everyone has a quiet evening.

2loud hope your LO is better today xx

Oh and re the email/letter....thanks Itsme. I do write a mean letter. It's one of my strengths ( no that I'm bragging) so if anyone needs any hep with letters etc just give me a shout ( I used to be a children's advocate :) )

Hi, we are home (for now) I managed to drop my phone in the toilet, it was in my back pocket so I was internetless!

I think we are going to be having a fundoplication done, we are not keen but I think another chest infection will make our minds up.

I have lots of washing to do as Dh didn't do any, and need some sleep. I will read and catch up tomorrow.

Hello ladies! Not read the entire thread, but thought I would pop in and say hi.

Dd2 isn't tube fed (was ng fed as a baby and had whole history of feeding problems due to her cp) but we had a truly brilliant feeding SLT from birth, who recommended this website to us. I thought I would share as it has lots of info on it, and not everyone has access to a good feeding SLT.

I wholeheartedly thank our feeding SLT for dd2 now being an oral feeder, but it wasn't easy, and I spent the first two years of her life pretty much in tears every day, so I do understand where you are coming from.

Anyway, I'll be off ski, but have a look at new-vis, the 'feed your mind' links are good. She's a specialist feeding SLT in the US, I think.

Love to all x

Yay happy for you now that your home!
Sack the washing an extra day you get some rest!

And thank you womanintheattic don't want to call you mad
I will check them out and I'm sure everyone else will too.

Quick q for all.
Has anyone's lo experiences very bad same sided leg and arm/ hand foot ache?
Ds keeps getting it x

Ds breakfast is nearly made-
1 pear + 1 apple + 10mls sunflower oil+ 1 piece bread x

Morning all.
Hope everyone had a good night.
Tooloud how's your ds now?
Kal how's dd?
2old,sneezecakes (and your mama), starfish, galli and everyone else- are you all good? How are your lo's today?
( I hope I remembered everyone )
Ds had his bread,pear and apple mixed with oats and summer berries baby rice. He's tolerated it :)
X
I'm amazed by it.
He's getting more cals, vitamins and goodness x

Isitme...that is fantastic?

How is everyone else? We are well. ALready done 3 washings this morning and off to take Ds to Ortho appt at sick kids.

Isitme...is there anything in particular which triggers the pain? Is it muscular or bone/joint do you think?

Ds does get pain , mainly in his left side, but that's his weak side. Usually if he is too active, not active enough ( I think he may have arthritis to some degree) or if he is becoming ill he gets a sore big toe ( like screaming sore! No-one has any idea why!). If you can amybe work out when it happens may give you a better idea of how to prevent it or what to flag up to the docs.

So glad you are back tooloudhere. Hospitals are horrible places and sleep impossible. If you go for the op I hope its not a big one, I know the principle but no idea how they do it. We just hope the PEG is a temp thing but don't know yet.

Thanks madwoman...as usual a mine of information!

Isitme. We are all fine. Sneezecake (my big DD) and her DH and DGS are on holiday in Devon and have found some sun and loving the break. If your DS has unexplained pain I would get him checked over. I think he is developing physically in the usual way so it's worth getting this checked.

Sun is peeking through here so maybe I can get in the garden

I've not really noticed anything that triggers it. He's got paed appointment in July and I've asked for an earlier appt. His general paed is wonderful. I will let her know that he gets pain and about his uti's.
He still getting temp and still in pain when urinating. I rang docs and they had no appt left for today.
I've caught ds sat in a corner on the floor or on the sofa massaging his arms and legs. He then makes me do it. He did have a bit of a limp and when I took him to drs he said he's walking fine atm so I'm not referring you I told him that it only happens when he's in a lot of pain Im going to ring through to gp again and ask for telephone appt.

X

He's been pretty bad today
Got him weighed and yay he's put on a bit of weight!
However food he had 3hours ago via tube has come out in his sick.
I think I need to rethink my tactics.
High cal low volume stuff. A fruit with yoghurt and butter I think for tea.
How's everyone's day been
X

Isitme. We used to do the high cal thing with oral feeding. Never got anywhere with volume! We are trying to increase that with the PEG but slowly. So pleased with weight gain, it was a lovely moment for us when DGS reached a more normal weight

He went on a boat today and was seasick......makes a change from plain old puking!

Awww bless. Bet he's enjoying himself!

When I went to get ds weighed I had to take all his clothes off and nappy. He wee'd every where and screamed coZ he was weeing. Then he was sick :|
We've come home he's got empty tummy ( proper empty) and he's had a few bites to eat orally ( about 4-6 small bites)
X

How are you all? Blended feeding seems to be going OK I am quite . Busy day today DC's annual reviews and DS weghed 27.2K and DD 17.5K so a little bit sad especially for DS 14 in Sept. Ah well.
Itisme surely they should be sorting his urinary problems out, its not fair on the poor little lad.
Tooloud hope you are settled back at home and washing done. Phone down lavvy sorry
Hope you all have a good night XX

Aww. Apart from the weight did they do ok?

Gp said we can't just change antibiotics which I agree with but I do think they should of seen ds today.
I had to go up and collect prescription and the receptionist knew the problem and I told her he's weeing and screaming at the same time. She said the same and that I've got to take his urine up in the morning (weather better be good I've got a fair bit if walking to do!)
And if he's still the same ' they will have to sort something out'
Which to me is hospital? Ds keeps losing his energy. His temps aren't through the roof but he's normally always cool so a slight temp is enough to pull him down.when he had meningitis his temp was 38.9.
Ooh god that day was horrible.

He refused morning feed and he felt hot but I thought nothing of it as he was on my chest and I thought it was just shared body heat.
He refused next bottle too and just kept grunting. I thought he was constipated but nope...
That day. Bloody hell
X

Sneeze: It's such a great feeling when the puking has a 'normal' reason isn't it!!

Isitme: Poor DS. No wonder he is puking. Trying to get high cal stuff in when he is unwell probably won't work, but will work better if the high cals are carbs instead of fats. Fats seem to be the worst if DS is unwell. Sugars, honey Agave,syrup etc are all high cal but pure carbs.. Poor DS and Grrr at GP for all of it. We are very fortunate ( or not in that he needs it) that we have open access to the children's ward in the hospital. Is your DS ill regular enough or complex enough that you think they may agree to that? We always foubd GP to be absolutely useless with DS.

Tooloud: Hope your phone survived! Glad you are home. Hospitals aren't the best place for sick people to recover I don't think. Hopefully things will really improve now you are home.

2old: :) re blended feeding. :( for your DS. xxx

I'm going to discuss that with the general paed. She will make it happen hopefully
Right so stuff like pasta, bread and rice is better? I did fish fingers and broccoli today :)
also found out breadcrumbs dont blend
X

Open access is fantastic.........cuts out the unnecessary examinations and eejits in between and they get seen by docs who know them!

If DS is poorly I tend to stick with chicken, rice, banana, apple, but you'll know (or will find out over time) what's best for your LO when ill. xxx

you lot (how rude) for your support. Off tomorrow for a meeting for children with complex needs and have your comments in mind I promise I'll do my best. Mind you I am so tired I may zzz through the meeting.

Good luck [hugs]
I was going to say have but nope we dont want you tipsy on the job lol.

Here have a and instead

I'm sure you'd do well x

Too late 2 who cares?
Sleep well