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Acid Reflux because of Gastrostomy.

AngelasMumAngelasMum Member Posts: 4
My daughter Angela HAD severe acid reflux after she had her PEG fitted. Another Mum fed her child real food and juices, liquidized, sieved and then syringed down his PEG. I tried it as a last resort before going down the fundo road, not expecting much. Success, immediately. I was scared to take her off her 3 different types of reflux medicine at first, but now she hasn't had any for 2 years. The SCOPE carers also noticed how well my daughter was and have stood by me all through the difficult journey that we have had, standing up to our dietician, who tried to turn our doctors against the idea. The door is now open, thanks to SCOPE. The carers are now allowed to feed pureed food, once a risk assessment etc etc has been done.If anyone needs any advice on how to prepare real food so that it can go through your childs PEG, I will gladly help if I can. It has changed my daughters life and our families. She was living in a world of misery, And so were the rest of us, constantly trying to ease her pain. We couldn't go anywhere, or do anything, it got that bad. My only regret is that I'd not heard of this earlier.

Replies

  • joden1joden1 Member Posts: 22 Listener
    HI, please could i have more info on this?
    isn't it stressful blending all the food etc?
    my son is 9 and has gastro tube and has done since 3 but he has reflux and can be sick alot we never want him to have the op where he gets stomach tied though as he is very good at bringing up chest phelm.
    josie x
  • AngelasMumAngelasMum Member Posts: 4
    Hi, Yes thats real important, One of the reasons I didnt want to , plus Ive found out since, yhere are many other negatives to a Fundo and constant formula feeding. Its a bit more work than having free food delivered to the door. Angela is my youngest of four and I was a bit overwhelmed when I first started. But its a lot easier than it sounds. I either make up two big casserole dishes of veg, one with chicken breast in. Then just before its cooked, chuck a salmon fillet in the veg one. Then liquidize and sieve each into a bowl. Put it in little pots and freeze some. You can do it once a week. For breakfast Angela has porridge, a bit of fresh fruit, spoonful of cottage cheese and manuka honey then I put it in either a liquidiser or this brilliant thing I recently bought called a Nutribullet. It liquidisers everything in cups, so no washing up hardly. If you wanted to do your child fresh food every day, the Nutribullet is the way to go.I use all organic veg, but you dont have to. It does sound a lot of hassle, but it really isnt, and its so much better for your child. What type of tube does your son have?
  • joden1joden1 Member Posts: 22 Listener
    hi Angela
    My son has peg tube. He vomits mostly on transitioning between places or if change in routines , but also a few other reasons. We have to put his music on through his headphones to distract him so hopefully he doesn't do it, but he can't have this on at school and everywhere he goes and its such a difficult task cleaning him up after he is sick now he is bigger and i have 2 younger children, and i feel school etc get fed up with him being sick even though they say they don't.
    i tried to make him go cold turkey on his iPad/ipod etc and i just had loads of sick everywhere and stress for him and me.
    The school is getting a behaviour psy involved to see if theres anything else to suggest.
    How did her stomach react to food? did she have food when she was younger?
    josie x
  • AngelasMumAngelasMum Member Posts: 4
    edited September 2014
    Hi Josie,
    Wow, that sounds really difficult. Angela did used to bring her whole bottle up sometimes. I knew when she was going to do it, she would heave but I would rub her nose real quick to distract her. Sounds a bit cruel, but its much more distressing for her to throw up and be stripped and showered. 99 times out of 100 that would stop her. I managed to feed Angela until she was 8, but it took hrs, and we werent getting enough into her as she was growing, so when she had her 1st hip surgery I got the tube. She has hardly nothing by mouth now. Which is sad. But she is never ever sick now. I think its the consistency. I made her porridge really runny a few months after I 1st started by mistake, she had reflux straight away!! It might be just what your son needs.
    I see that you have won a negligence claim, we did with Angela when she was 8yrs It took another 2 years to get the amount, with all the reports from all the specialists. Life expectancy etc etc etc. Nightmare. There are so many people who add a few noughts on the bill as soon as they know youve got a claim going through. Disgusting.
    Angie xx
  • CommunityTeamCommunityTeam Posts: 87

    Scope community team

    It would be great if you could share some of your tips and suggestions in our feeding tubes tips section: https://community.scope.org.uk/tips/feeding-tubes That would be a fantastic way for people visiting the community now and in the future to benefit from them.
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