Hi all,

My son is now 9months and has had successful join his first day. He recovered well and gradually took bottle and breast. After a couple of months he developed sever reflux, which an urgent Nissen was needed along with gastrostomy. This was a difficult time with lots of op complications leaving him without oral food for 4wks.

the treatment and complications added to the fact he didn’t take to eating orally again.

We are trying to stimulate he with finger exercises and wiping food on lips and putting some in his mouth. He has a big reflex to vomit. i’m finding it hard to keep up and to try and progress which doesn’t seem to be the case at the moment. we have been going for 7months now and with little progress feeling disheartened on what else I can do for him.

He does suck his thumb but doesn’t place objects near his mouth.

is there any tips on things I can do to help him?

any advice would be helpful.
x

hi,
  i am afraid i don’t have any advice but i know just how you are feeling, my son benjamin is nearly 11 weeks old, he had long gap oa which wasn’t repaied till he was 6 weeks old, he was the put in a dug induced coma for 7 days, so the only thing he had ever done was a suck a dummy which luckily he loves!!
At 7 weeks old we tried his first bottle, he took to it quite well, and come home still with gastrostomy, but taking about half of his milk orally, but after 8 days of being home he started coughing up really thick secretions, wasn’t interested in milk in the mouth and i didn’t want to false him, as he looked so uncomfortable, well it turns out he had a bad strictue, was taken back into hospital for 4 days, so he had nothing orally for 7 days, he has now been home 5 days and will not take the bottle at all, its like he has forgotton, or he links it with how uncomfortable he was with those thick secretions, so any advice or tips would also be great xx

hi I’ve just read your reply. Yes although we arrived in different ways we are in the same boat. Its so difficult to know if I’m doing too little or too much. I’ve cooled down so much I think that I’m not helping him enough.

I try to think like him to understand that his mouth has taken so much treatment and negative actions that he has the memory of that plus the fact that he no longer finds pleasure orally.

Its great he still takes the dummy so that really positive. Keep going!

x

Lili,

I hope Kay won’t mind me mentioning her but if you look for Dawnhaka (something like this) then she will be able to assist you further xx

Hi Lili & Claire,

Again I have no (successful) tips but our daughter Elena is in exactly the same boat so it would be good to keep in touch in case any of us do find some successes!

Elena’s story is relatively similar - TOF repaired and she breastfed well for a week, then severe reflux caused her to aspirate so she was nil by mouth until after a Nissens and a gastrostomy was fitted.  She came home partially breastfeeding (mostly tube fed) but 4 weeks back in hospital with RSV resulted in her refusing to take anything orally.

She is now 4 months old, loves sucking her dummy and will tolerate things (her fingers, my fingers, spoons, teets) in her mouth but if they have liquid (milk/water) then she gags/cries etc.

She is having a contrast study done on Monday (although how they plan on getting the contrast fluid into her I don’t know!)to check there is no medical reason for her not drinking ... but I doubt there is. I guess we’ll start trying her with food soon but I’m not expecting miracles!!

The Speech & Language therapists are full of suggestions ... which we try ... but no progress so far.

Let me know if you find anything that works!!
Lou xx

Seeing as Jody has invited me into the conversation, I will reply

Harriet is 21 months and still tube fed. There are no reasons why she doesn’t feed only that she has not got the natural instinct to swallow (was 4.5 months before being joined up and then 6.5 months before being given any solids) We know she has a safe swallow with both liquids and solids. This was determined via a contrast study and Lou, they had to pin her down and syringe the liquid in. No pain no gain unfortunately.

It has put my mind at ease that she is safe to swallow, she just doesn’t want to.

My one tip would be DO NOT FORCE FEED…..........

I tried (being desperate for Harriet to eat) and it put her back and could have given her a food aversion. She puts everything in her mouth, but has a food radar and inspects everything if she suspects there is food on it.

You just need to go really slowly. Do messy play and get your children used to food and the textures. it is also important to look at how they react with different tastes i.e. sweet, sour and also hot and cold.

it may be best to stick with something like custard or baby rice which is bland to at least get them swallowing. The oesphagus is a muscle so really needs to be used, but as other mums and dads have said. They will do it in their own time. Just be patient and don’t worry. If they are growing and infection free then focus on that.

Once they start feeding, we only have stickies to look forward to anyway!!

Kay
xx

Hi
There is another forum for tube fed kids that I think you would find helpful. http://tubefedkids.ning.com
There is lots of ideas on there.
Jody

Thanks for the responses - the tubefedkids website is really interesting, it seems all the success stories are a result of following the Graz model - does anyone know of any successes following the more traditional methods?

I’m trying not to get fixated on Elena returning to oral feeding as I know that even if she suddenly started drinking again tomorrow there are still lots of other (probably bigger!) issues.  I think because it is the most visible sign that Elena isn’t like a ‘normal’ baby it is the easiest issue to latch on to.  Her brother has the most awful cough at the moment and I know if Elena catches it she’ll be back in hospital ...

Hi all
I’m mum to Isobel(age 3, long gap OA/TOFS with Gastric transposition). Isobel experienced severe oral aversion from 3months-12months, following complications and repeated surgery. I feel in her case it was partly due to interuptions in the normal instinctive suckling response due to her condition, and negative associations with feeding. She was also wholly tube fed and thus had no appetite. She took oral sips of water for the first time in 9 months only when she was starved and desperate for fluids due to gastric virus. All I can say is stick in there amd try not to get too upset or force the issue( easier said than done I know). Speech therapy is essential and their technique’s did finally show results, especially when you get to the weaning stages- messy food play and oral de-sensitisation are important. I was heartbroken at times by Isobel’s oral aversion, but there is light at at the end of the tunnel, and even if your children skip some of the ‘normal’ stages of feeding and weaning, they will get there in the end I’m sure.
Isobel is now 3, and although she still has some tube feed overnight, she now drinks orally and eats 5-6 times a day. She has a limited diet, but enjoys her food and has made progress far beyond our expectations, following a gradual tube weaning approach. This doesn’t work for everyone I know, and the Graz-type technique work for others, but there will be a suitable way for your children.
Best of luck
Joanne

Hi all and thanks for all your support and responses. I have been going through a real down phase with the food. Emile is recovering from his time in Hosp and well I think we are returning to where we were before. Sometimes he thinks its funny play and closes his mouth and shakes his head…. thankfully not finding it agressive.

I think that he prefers warm food to cold so I’m going to focus on warm foods. I also think that his first meal of baby rice which i make with his milk I use for Gastro is easier.
He has also started to blow “raspberries” using his lips and tongue - i think this is good too.

He seems to leave the food in the mouth not knowing what to do then after time with swollow with retching. The thing thats really bothering us at the moment is the button area is extreemly sore and leaking bleeding causing him pain and less freedom to play! Just gets me down as the only way seems to eat orally to be able to solve this!

Claire: I think the fact your little one is tolerating a lot of oral activity is really positive and I was told that the move to solids would be better for Emile because they can control it more… so hopefully this will be good for you.

I’ve also been told to explore strong flavors so we let him taste all that we have. And play with our food too!

Well there’s my news… hopefully moving forward slowly
x

Sorry we are from France and have not really seen anyone over here about this topic could you please explain the Graz-type technique and gradual weaning approach. I think I’m doing the later but I’d like to know what these are. Maybe there is another technique for us???

thanks x

Hi Lili
If you google Kinderpsychosomatik Graz you will find the Graz website which has lots of information on tube-weaning and tips for parents as well as a full explanation of their methods. The gradual tube weaning technique is simply reducing the volume of tube feeds to stimulate appetite and hunger in the child, which will hopefully encourage them to eat orally. Then as they start to eat more the tube feed is reduced further and so on.I think this seems to be the usual approach in the UK, but it doesn’t always work for everyone and some children have gone to Austria to the Graz clinic and had remarkable success in a very short time. Gradual tube weaning as you would expect can take a lot longer- months/years to achieve the desired outcome. I think peadiatricians in the UK are starting to acknowledge that the Graz idea of withdrawal of tube feeds under medical supervision can work for some children also, but it’s not the established practice in most areas as far as I can gather.
Good luck
Joanne(mum to Isobel age 3, TOF/LONG GAP OA and Gastric Transposition

Hi Lili
Have a look at the tube fed kids forum, the address is http://tubefedkids.ning.com/forum  There is so much information, including books to read and links to other sites. Lots of parents have done the Graz model either in Graz or by email but other parents have weaned their children themselves by gradually reducing their feeds. That’s what we did, reduced the feeds to a certain point, and then stopped them totally- still scary but it paid off for Jack. Lots of stories and ideas are there, you just need to spend some time finding them.
Hope that helps, good luck.
Jody