Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Teresa84. Is your LO formula fed? DGS had a peg fitted nearly 18 months ago, he is 4 going on 5. We had exactly the same problem after initiall being fine on formula, so it wasn't allergy/ intolerance. We were pointed in the direction of blended diet, which is basically food, blended and plunged down the tube. It hasn't totally eliminated vomiting but its massively less. He is healthier, taller and heavier than on formula, and we ensure he has the best range of nutrients possible. Facebook have a blended diet UK page with lots of useful advice

20ld, hope you've turned off the central heating at last

Xxxx

teresa84 Having had 2 with complex heart problems I found it easier to feed little and often so agree with 24/7 as heart defects usually cause enlarged livers which affects the gut.
Agree with oldsneeze many children do so well on blended diet but so many dieticians are up the bum about it

What heart defect has your DS just being nosey as a very old paediatric nurse

My LO's are in respite so GOODNIGHT a sleepful night in store

Teresa84 I didn't read the bit about the heart problems (x posted), its just cp causing the poor feeding here. BD could still work but I would look at the medical implications with your specialist. Formula isn't necessarily a healthy option especially for children. BD is after all only food and it can have great benefits. Often you can get rid of mecications for reflux and constipation, but again check the implications for your child. Does he eat orally at all?

Welcome Teresa.

He might need the fundo to help with his vomiting.

Sometimes meds dont work and thats what is needed.
Its called a nissan fundoplication. Google it and then ask your health care provider about it if you think its appropriate.

Im going to ask his gastro about seeing someone regarding allergies as hes been really bad as pollen count ia high. His ashtma is only just controllee with both inhalers. Im sure hes allergic to cows milk and soya as when we tried eliminating it before his constipation was better. Right now hes very constipated again and im trying to clear him out before we end up in same situation as last time.

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Cow?s milk allergy may be aetiological in up to 40% of chronic constipation.8 Strong history of atopy in the individual/family, low IgA, history of gastro-oesophageal reflux refractory to treatment, blood in stool and recurrent viral infections in early childhood may be suggestive of such a diagnosis.9 The appropriate treatment would be removal of the offending agent from the diet and in children less than 2 years of age, substitution with a casein or whey hydrolysate such as Prejestimil, Nutramigen and Peptijunior rather than soya is recommended (Soya displays upto 50% cross reactivity with cow?s milk protein). After two years of age, soya might be needed because of its superior palatability over hydrolysate milks. In such cases, rice based milks supplemented with calcium is also a useful alternative. Such cases could be referred to a paediatrician with interest/ gastroenterologist for diagnosis and management

From his gastrics website and ds had low iga x

Hi he does eat a bit orally but just brings it back up. The other night he was sick and brought up all milk and the food he ate for his tea 13 hrs after having it. I just don't understand why it happening and all health care people can't give me any answers and don't seem bothered to look in to it any further. He also has asthma and can't do things other kids do as he will just start being sick. I just feel so sorry for him

It does sound as though slow gastric emptying is a possibility if he vomits on normal food.

Have they looked at food or milk intolerances?

We didn't go for a fundo as it wasn't suggested but its often done with a peg. I've read that the gastrostomy area fixes the stomach to one area of the abdominal wall, which it obviously does, and that the normal movements that the stomach makes (think washing machine that rotates verticall and horizontally at the same time) is inhibited making digestion slower.

Fundos only physically stop the stomach contents coming back and won't sort a slow motility problem out.

Difficult

Thats what has been happening with my lo.
I remember he had something one morning and that night past midnight he was sick and it was what he'd ate in the morning.

Domperidone could help. We tried low dose erythromycin too as it helps empty stomach
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The problem is no one is willing to do anything he has been like this for almost 4 years he has got so used to it he carries a jug around with him all the time. And we never know if he has a sickness bug or not. The good thing is he is still staying the same weight

DS went to theatre with consent for a fundoplication but surgeon said it will not help as he had motility problems so a jej tube was inserted so to bypass stomach but needs tube fed 24/7 but is still able to puke gastric contents
Pleased to hear your DS's weight is stable.
Sad about jug poor little lad bless him
love to all who know me xx

That's good his weight is stable and that means hes not bringing everything up. Its sad that he has to take a jug with him. Poor lil man.

Off to ring hosp. Got some fresh bleeding :/ the day I wear my white top and white skirt
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DGD good luck XX Go for it girl XX

Thank you. I was getting contractions but not often enough. Blood is coming from eroded cervix so thats fine. Baby is now fully engaged unlike last Monday when he wasn't. Dr said 2nd babys engage before birth. Still getting horrible contractions but not often enough.

Baby is back to back so need him to move
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DGD if babe does not move from POP it will be a longer labour (usually but you will probably break the mould!!) How is DGGS send him hugs
Life crap here spent all day at hospital with Jay as respite were concerned about back wound. Now on AB's back on Friday they originally said Wednesday but relented due to distance and my experience
WHO IS ANNABEL???
Hope you other reprobates are OK
Sleep well if you can
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Isitme. If things are not progressing in normal delivery don't hesitate to go for c section. Jess was fine with it all. Scar took ages to heal but otherwise ok.

Love and hugs to Jay. I hope he is not uncomfortable.

Xxx

Ive been on all 4s lol and sitting forward too. Mw said lean forward to help baby move but I doubt he has. I can still feel his limbs like before.

Still nothing as of yet. Went in to hospital yesterday for the rest of the ferinject iron infusion but I was 'severely allergic' to it last time and they didn't wamt to chance that happening again. They told me after making me wait nearly 4 hours as they were really busy!!

Doing the things I should be to help baby come along but not working. I am really crampy a lot of the time so hopefully not long (10 days until due date) I see constultant on Monday regarding bloods they might just give blood instead. I will ask for sweep on that day x

Hope jay is feeling better soon x

Breezes in like never been away.... Hi see everyone been busy with new babies all around, no 2 old not talking to you. Sorry to see all the poorly ones.

Hi Tooloud. We are hoping for a mini button here before school in september, feeding blended diet down frekka peg, new baby is a happy puker, otherwise pretty OK.

Isitme its all so nervewracking, so glad its all done here. Just dont be neurotic a PSB mum and take newborn to A&E because he was sleeping too much

Oh. 2old didn't mean not talking to you, meant not about babies, sure you know what I meant.
We have the button jej tube but have had all variety of buttons and then back to pegs following surgeries etc, much prefer a button over a peg any day. Even though ds has an extension permanently attached due to continous feeds wouldn't have a peg for any longer than necessary.

2old don't know what sort of jej jay has but have they checked placement, if he has started wretching badly all of a sudden could it have migrated back to the stomach (only helpful or valid if through gastrostomy with jej extension).

Wow. Tooloud makes an entrance.

Welcome back
Hows your lo?

Lol sneeze that sounds like something my mum would of done. When lil bro was a few weeks old he was looking on his right hand side where big bro was amd she started screaming oooo hea broke his neck he cant move when big bro moved to the other side his neck did too lmao.

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We are ok thanks, ds has been really poorly has been in hospital for a couple of months but things looking a bit better now.

The last time we heard from you he was bad with his chest. Poor lil man.

How is everyone?

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Hi all,
Rapidly losing the will to live here
Jay's back is not clearing up as quickly as they would like so a further week on Augmentin and what does it do --gives him diarrhoea all up his back several times a day all over the dressing---now we have a VERY sore bum giving diarolyte for 24 hrs/

Tooloud glad to see you again hope your DS continues to progress. Re jej tube as you say it is threaded through his gastrostomy but it is still in the right place as I aspirate gastrostomy after I put red medicine down jej and it comes back white (TMI) crafty yea!! He is still retching and puking.
Also missed hospital appt for the 2 LO's this week fortunately hospital very understanding

ENOUGH MOANING WOMAN!!

How are you all?
DGD not long now don't forget it is your body. Love to DGDS XX
Oldsneeze is every thing OK> Am sure I am being dense but couldn't understand your last post.

Take care love to all scallywags
XXX

We are all OK. I probably talk gobbledygook all the time

buddy buttons are finished at last. Will just wash them in angels tears persil non bio and send them on their way They're not as pretty as the commercial ones but just as serviceable, and have natural bamboo fleece on the skin side, super absorbant and organic and natural! Hope Jays wound responds, it must be horrible for all of you.

So sorry tooloud that the littlun has been poorly for so long, lord, I would be shattered with that.

Jess missed her wheelchair appointment as read 1 pm not 10.00 on her calendar. Also we are on the naughty step with orthotics as we dont put the AFOs on el all the time (in fact almost never). Jess lied and said we did. He said well, we dont normally give peidros AND AFOs as he should be wearing the latter. I backpedalled lied frantically saying he wore them sitting for an hour a day (thought we were going to lose the peidros which is all he wears!). Felt like we had both wrists slapped when he didnt bother to cast for new AFOs....but he is ordering new peidro boots what can you do though when he gets distressed and in pain in his 'foes'?

love to all xx