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!
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[Tooloudhere]

Back again, out of interest what blender do you use. Will a normal one do or do you really need one of the £££££ vitamix ones I have read about?

[rosielum]

Yeah we have a vitamix and its the best thing i've ever bought- i believe you can get a medical discount. Blendtecs are also great and i've heard of them giving away reconditioned ones.
I now totally manage my DDs poos, the key has been the right balance of whole grains and water but the factor that makes the biggest difference for her is enough oil. I started off putting 5ml of flax oil and 30ml of prune juice down her tube and i could not believe what came out. She now goes every morning like clock work. never thought i'd spend so much time thinking about/discussing poo ha!
'blenderized food for tubies' has a facebook page and also a forum that has been really helpful to me. I sound like a proper evangelist..oh well

[Isitme1]

Rosie he's going for corrective reflux surgery and a surgery to help his tummy empty quicker and maybe tonsils out too.
He suffers from sleep apnea and gets a lot of chest infections.
Immune system down due to meningitis and septecmia and lack of nutrition too.
You wouldn't think something as common as reflux could do so much damage!
My prince isn't talking yet. No potty training either.

I do think your right when you say proffesionals are going of protocol.
I've not said nothing to dietician about baby food.
She's on annual leave for 2 weeks. You would think that there would be like a step in dietician?
I keep getting wrong syringes from delivery company and the only person who can rectify it is dietician.

I'm very glad I made this thread. We are here for everyone :D

I dont drink so have a instead lol
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He's refluxing as I type this. Keeps being sick ( into throat and mouth but swallowing again)
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[rosielum]

I don't drink either..peppermint tea for me! A fundoplication (guessing thats what it is) and pyloroplasty are pretty major surgery. Your little guy has been through alot. Which formula is he on? Could you try a different one? My DD used to reflux like that alot by the end of the day and itwas volume issues for her. Also have you tried thickening his feeds at all? you can use just baby rice (or i used to use plum baby four grain cereal ) so atleast it stays down abit more.x

[2old2beamum]

Tooloud please do not worry about 2old it is a very apt name as I am an OAP with a 6 yr old

Itisme very interested that your DS had meniingitis it has ruined my beautiful DS's life. What a vile disease. Unfortunately a fundoplication was not possible so we had to go down the jej route. for starting this thread!

Until we talk again hope all goes well XX

[2old2beamum]

OOPS

[Isitme1]

Yep then ones.
It doesn't physically come out its and up and down his food pipe.
Hes on neocate advance as it's a pre-digested milk.we've tried peptisorb, fortini, nutrini, pediasure and neocate.
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[Isitme1]

Thank you 2old ( need to get you a new nickname lol I feel cheeky )

X
Hope everyone has a good night.
I'm going to be nosey and ask
Why are your lo's tubies?
If this question offends anyone I'm sorry.
A bit of background helps to see of we can relate more ( ? If that makes sense lol)
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[2old2beamum]

No in a way quite like 2old----makes me feel like a piece of antique furniture probably riddled with woodworm
DS post meningitis complete aversion to food---struggled for several years weight gain dismal Oddly enough when they inserted PEG they found his stomach in his chest, nothing to do with meningitis.
DD has Emanuel Syndrome had massive cleft palate was repaired but still managed to aspirate.
Now I'm going to be nosey how else your is your LO affected by the evil meningitis XX

[Tooloudhere]

Ds is a tubie because well we don't know! He is undiagnosed, some sort of genetic problem most likely. He has dev delay, deaf, visually impaired, doesn't grow and a whole host of other medical misdemeanors to keep everyone on their toes.

Whilst I find it very sad I resolve by saying it is who he is, how he was made so to speak and that he is loved for who he is. It must be very hard to have a childs problems caused by an illness that isn't how they started out life. Don't mean to offend anyone by that but we never had a glimpse of anything else. I know a family whose son was deafened by meningitis and I know they find it hard to know he had hearing and lost it.

2old you made me laugh never heard someone say they like the thought of being riddled with woodworm!

[Isitme1]

My ds had it at 10weeks if age.
Just after being diagnosed with reflux.

The main thing that meningitis effected was immune system he keeps getting ill.
Hes due for another hearing test but I think it's due to his speech and language being delayed.
His behaviour is a bit erratic but not too bad atm.
He's a Tubie due to food aversion and severe gastric reflux, failure to thrive and poor gastric emptying.
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[Isitme1]

Awww tooloud. Google deletion syndrome ( or something like that) Ive read a lot about it but it's not really ds. Might help you though?
He's just scared of food.
It really gets to me when he's like this ( not eating) but there's not much left for me to try.
I remember taking him around the block every 3 hours for a bottle in his pram so he would take a few oz.
Wow. Ive tried singing, dancing, playing outside, playing inside? Food time in pram at the park, picnics, food time in car, family food tv, in front of telly, up in our room, at next door neighbours, in restaurants, in town... List goes on but I've realised that he just isn't comfortable with it and it's just tough.
I'm a shopaholic lol. I try and fill his 'gap' by buying him things.
Hes got a wonderful wardrobe, lots of toys and books. Loads of different plates, cups, glasses, bottles and cuttelry. His dad isn't here due to visa so it's another thing missing in his life.

Does that make sense?
Hope everyone + lo's doing well x in his life.

Does that make sense?
Hope everyone + lo's doing well x

[2old2beamum]

Isitme my DS contracted pneumococcal meningitis at 8months old. Similar to tooloud he is is profoundly deaf, completely blind also. cerebral palsy and poorly controlled epilepsy, he is totally dependent on us. Please do not think we are moaning we just love him. He gets brilliant support from the LEA and the NHS. But has no SW
Isitme like you buy them so many things Is it to compensate?
Now off to do meds then BED so I hope you all have good nights sleep XX

[Isitme1]

Don't worry about letting it out. It's healthy lol.
We are here for you.
I think your ds is very lucky to have a mummy like you!
Hope you all had a good night
And good morning to all
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[Isitme1]

Yep I'm trying to compensate but obv isnt really working.
Just feels like I should of gone private at an earlier stage. It never occurred to me about going private. I should of got ds more help but gp wasn't listening. I was at the doctors every 2nd day saying ds not eating and gp would say 2 oz a day is enough

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[Tooloudhere]

Morning, I think guilt to one level or another is part of being a parent isitme, you just always want to do the best for them. Hindsight is wonderful but you should not reproach yourself. We still have issues thinking if we are under the right team, our ds is so complicated and sometimes we just don't seem to be 'maintaining' him in the kindest way but nobody seems to know what to do. I know Dh has looked into specialists here there and everywhere and we don't know whether to move care or not. Don't get me wrong our team are all very dedicated and seem to care very much about ds, I am trying to say everyone has doubts especially when things aren't easily resolved.

2old, I think we have compared ds's before ( I know you have a few with sn ) but can I pick your brains? Ds has issues with sshhh clean things especially his bedding. I know it's a sense thing but if I try putting him to bed and he smells washing powder he screams for ages. I've tried doing the pillow case, sheets etc separately so everything doesn't change at once.

I leave it along as I can but last night he had clean pyjamas (after 4 nights I insist) he was not too bad when I put them on him so I thought I got away with it but no he was awake four times in the night trying to rip them off. He is still only 1 so a baby really, with communication being an issue it is hard to explain anything.

[Isitme1]

You've probably tried this but can you get an unscented washing powder for ds? And buy him the same pair of pjs? If he had 2 of everything it may just help him settle a bit?
He might not like certain things changing?
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[Isitme1]

The only thing ds will let me put in his mouth is a dummy.
He doesn't let go of it.
He won't have breakfast.
I've resorted to giving him crisp to encourage him to pick up and atleast play with but nope. On the odd occasion he will put a tiny bit under his dummy.
:(
Rant over lol
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[Tooloudhere]

His pjs are all the same so they feel the same to him. He is ok with daytime clothes as he spends all day with me. I think it is because he can't hear and see well that he uses his sense of smell more and doesn't like it when it doesn't smell of his bed but you can't not wash his bed forever.

Do you have a feeding specialist/ salt? It sounds like you really need someone to help you decide a strategy for your ds and food. I am no expert and please don't be offended it sounds like understanderably you are very emotionally involved in his eating. I just wonder if he picks up on this and feels pressure.

If it were me I would stop trying everything and do the same thing every day. Put him in his highchair or whatever you use three times a day at meal times put food in front of him and leave him to it. No coaxing, no pressure if he eats anything fantastic, if he touches it great, if not you have peace of mind he is getting calories through peg. As I said this is just my thoughts, ds isn't allowed to eat but I have quite a few children one of which had severe reflux and food 'issues' and this was what we were told by specialists then and it worked.

[Isitme1]

I don't feed him myself.
He prefers food that he can and eat and control.
I do worry but I do understand that if I let him see I'm stressed around feeding times he might pick it up. Hence me venting here lol.
I put him in his high chair. Put some food in front of him and if its something that requires a spoon ( breakfast) I let him see what I'm doing. If that fails I put some food in front of him and get out of his sight.
If he eats he gets praised if not then I don't say anything and just start with pump feeding about an hour later.
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And I think your right with your ds sense of smell is strongest so he would want his comfort in that form.
Does he have a comfort blanket? If not try putting your tshirt in his bed the night you change his sheets and pjs so he can feel your presence there
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[Tooloudhere]

He does have a comfort blanket which I never wash! I may try sleeping with his clean sheets before I put them on his cot though, I never thought of that.

It sounds like you are doing everything you possibly can, I didn't mean to offend I just know we were lucky to get such help from a feeding specialist as they are not always available in every area. If I am honest even 5 years down the line there are some issues still with texture and new foods but generally a healthy diet is eaten which I didn't at one point think we would see.

[2old2beamum]

Just catching up with your posts after doing morning chores.
Tooloud have thought about your DS before our adopted children finally came to live with us i slept with a small blanket and gave it to Foster carer to give to the child to sleep with personally I think smell is very evocative so your idea sounds good. With our last DS being deafblind I was wearing Chanel No5 (rich bitch) when I met him and now I wear it all the time so he knows it is me. School also use a Hanky sprayed with it so he knows he is coming home.
Itisme I really understand your guilt how can you reward a child with a chocolate button etc if they hate food.
Take care XX

[Isitme1]

Tooloud I know you didn't want to offend ( which you didn't ) your trying to help. Thank you.
I guess you've thought of everything that I could suggest.
Hmmm when we last saw ds dad ( we went to see him) I told hubby to wear his vest a little longer the day before we left and ds wouldnt sleep without it until he was sick on it and had to wash it.
He played hell.
Then I got him a scented dumbo from Disney shops which he wouldnt sleep without out. He still uses it to this day.
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[sneezecake]

DS also has CP, (starved of oxygen at birth) and a food aversion. - he used to vomit at the sight of his bowl he preferrs finger food, sandwiches are a firm favorite, however he has all his teeth removed about 18months ago, 4 molars have grown since but he finds chewing very difficult (as you can imagine) so he get very frustrated with the sandwiches and finds it easier to feed mummy, (or the dog) and after 6 months of not putting any weight on we decided to go for the gastrostomy I must say in just over 2 months he has put on nearly 2kg!

We visited a special school before DS went to nursery, they used different smells for different days of the week, I think monday was strawberry day!
I wonder if you could use a smell he associated with going to bed, then hopefully the clean smell would be missed (wishfull thinking?) try using non-bio washing powder with comefort pure fabric softner, I find it has no scent (I suffer with eczema, and my skin will only tolerate non-bio stuff)

We also do the shopping stuff to compensate for what he cant do (so does mum, infact she is worse than us!)
we are going on holiday tomorrow for the first time since the PEG think we need a bigger car!

[Tooloudhere]

Thanks for all the suggestions, we do a lot of is bedtime routine on smell. Bath with lavender, cuddles with blanket which has its own particular scent!, get him to hold the curtains as I shut them with him. He is such a stickler for routine his bed smelling different offends him. I have thought of a cunning plan, I am going to put clean sheets under his original ones for a few days before whipping the tops ones off. Let's see if that works, we already use non bio for washing.

Sneeze cake I hear you on the holiday thing, I empty a massive plastic toy box and use that to take all the feeding stuff but it does take a lot of room and planning! We fill our car with children so normally end up taking two cars to fit all our stuff in!