I’m new to posting on the site but hope someone out there might be able to help.
Our little boy Jenson was born 7 weeks prem with OA (along with major heart abnormalities). As he was a long gap we had to ‘grow’ him and he had a successful join when he was 12 weeks old.
He has always been 100% gastrostomy fed, and we have tried what seems like everything with the speech and langauge therapists to make him eat / drink. He shows interest in food, plays and puts things to his mouth but will not eat / drink.
He also has a tracheostomy (for tracheomalacia), but this does not seem to have stopped his interest etc…
Is there anyone out there who has (or has had!!) similar problems??
Oh this sounds similar! Harrison, also two, has only had a gastrostomy since Sept, but also doesn’t eat. His weight is desperately low (21 pounds at 2 years 6 months) and the gastrostomy hasn’t put on as much weight as planned. He’s having a jejunostomy instead soon.
I’m afraid I can’t offer any advice, cos we’re going thru the same, but I can offer moral support! I bet like us you’ve tried everything in the supermarket, tried playing with food, making it fancy, giving stars and stickers to reinforce putting food to his mouth…the list goes on and on but he just won’t eat!
I’ll post more when I have a few more mins spare.
Claire, Mum to identical twins Oliver (non-TOF) and Harrison (TOF).
P.S. Even seeing his twin eat/get stars doesn’t work…
Hi Angela (and Jenson),
Sorry I can’t help with your problem but in a strange way was pleased to see your posting. My name’s Jayne and my daughter is Frances. The TOF people sort of introduced us and you did leave a message on my mobile but then for one reason or another I never got back to you, then I lost your number, then I got your number from Phil Cook’s sister, Jacqui (small world-she’s Frances godmother)but then it seemed like too much time had passed to call you! Felt a bit embarrassed that I hadn’t done it sooner.Can only apologise for not getting in touch, as we live so close.
Would still like to chat, if you would, Jacqui has told me that Jenson is now at nursery, how’s he doing? Frances starts nursery in May.
Jayne x
HI, I’m not able to offer much help as I’m sure you already know far better than anyone else what your son can cope with. My son didn’t have a tracheostomy or gastrostomy, and was still very delayed with eating. I truly believe they have so many negative associations that it is a massive thing to learn to overcome them, and understand that eating can be pleasurable, especially when it sounds as if they might have missed the early stimulation from swallowing?
I would take away all the pressure that you can, putting food in his mouth and playing is a really really encouraging sign, even if it’s frustrating that he still doesn’t want to eat it. I would keep offering foods that are bite and melt, so the actual volume to be swallowed is kept minimal, and they can rediscover the pleasure of taste.
chocolate buttons, puffy crisps like wotsits, mini meringues, the kind of thing that will melt in his mouth as he plays with it. Runny fruit purees and ice lollies [small ones that don’t stay too shockingly cold] and anything that can give an immediate positive experience.
If he begins to enjoy these [and remember it’s ok if it takes a few days or even weeks of him just ‘messing about’ with this sort of stuff, if it helps build his confidence] then when he starts to look for them and ask for them, can try adding a tiny tiny spoonful of another taste.
I used to worry so much that my son would ‘fall behind’ or that I had to prove myself to his health visitor etc, but at the end of the day , you are his carer, and you have to feel your way so he doesn’t get even more put off.
If you haven’t been referred to a speech therapist yet, request a referral, as they can offer lots more strategies to help get eating started.
If you can just get him to overcome his reluctance, [and if choccie buttons help him do that then who cares that it’s not carrot sticks? ] the rest will come slowly but surely.
Stay with him, keep offering slurps of his favorite drink after every mouthful to help him wash down any bits, keep reassuring him. It took months for my son to learn that the feeling of something solid slowly moving down his oesophagus didn’t have to be frightening, but he got there
Just read your post and your concerns are very similar to ours with our 2 1/2 yr old daughter Isobel (long-gap with gastric transposition following numerous complications. Isobel has only started eating during the last 6 weeks since we reduced her tube feeds. After a lot of research we were convinced that as well as her physical problems and surgeries, she was simply not hungry and that we needed to stimulate her instinct to eat.Following discussions with her dietician, surgeon and speech therapist, it was a unanimous decision that we had to make her hungry and see what she did. We reduced her calories from 900 to 700 over 12 hours at night and she has started eating small portions of soft foods and melting finger foods.We are seeing her surgeon and dietician this week and are hopeful that we will be able to reduce calories further to increase her oral intake earlier in the day.If there is no physical problem with Jenson’s swallow or strictures, maybe you could consider talking to your surgeon about reducing his gastro feeds.
Good luck
Im Diane Mum to Isaac who was also 2 1/2 years old and born long gap he is still fed via his jej tube and does not eat anything. Just wondered how Isobel was going on as we have been talking to Isaacs dietician and reduced his feed from 1000mls to 900mls. At the min it hasnt made much difference but im convinced that is we keep reducing it he will start to feel hungry. He was in hospital over Easter and started to lick food and take bites whilst he was very low on his milk feed due to his gastrostomy balloon bursting and his jej tube then slipping. What tube has Isobel got? any advice will be greatly appreciated.
Hi Diane,
Isobel has a roux-en-y jejenostomy with a mickey button.She is now on 600mls jej feed overnight and no tube feeds during the day.Stopping the daytime feed really kick-started her interest in eating. Does Issaac still have tube feeds during the day? We stop her feed at about 5am ( worth the disturbed sleep!), and by 9am she will usually eat a small yoghurt. We found that if we left her feed on until 7am,she didn’t feel hungry until almost lunchtime. After our last hospital appt we did drastically reduce her tube feed by half to 350mls, but she started to look tired and pale and then started with a chest infection and stopped eating altogether, so we quickly put her back up to 700mls. We discussed it with her dietician, who re-calculated her actual requirements as she is now so much more mobile and active, and they had gone up to 1200 cals/24hrs and we had been working on her previous requirements of 900mls when she had been ill and not walking. Once she had recovered from the chest infection, we agreed to put her on 600mls. She has lost about a pound in weight, but has stablised over the last month as her oral intake has increased.She’s still mainly eating soft food eg cream cheese,
houmus,yoghurt,icecream,grated cheese and bite/melt food such as chocolate stars,jelly,quavers and meringue, but she’s also started eating baked beans,spagetti hoops and garlic bread over he last month and generally eating more quantity and more often. She is also now telling us she is hungry, which is a real breakthrough.
It is tricky and stressful to know when is the right time for your child to think about tube weaning. We feel at the moment that gradual weaning seems to be showing results with Isobel, as she is experiencing some side effects of changing her diet eg stomach ache and looser stools as her body adjusts to a change in diet, and also we don’t think she would physically be able to eat enough volume to sustain her at present. She has progressed relatively quickly over the last few months though, and for example will now eat a full bag of quavers in one sitting, wheras even 2 months ago she would only chew a few of them and spit them out. In total we think she’s taking about 400 calories a day by mouth and 600MLS by jej feed.
Some people advocate a drastic tube weaning programme- have you seen the information on the GRAZ clinic website in Austria? It makes very interesting reading, and we did consider it for Isobel, but our surgeon wasn’t keen and
convinced us to try a more gradual approach, which appears to be working for her. If we get stuck at this stage however we would consider it again in the future, as we have had great reports from families who have been. There is also a lot of information and tips on the website regarding play picnics and oral aversion therapy.
Apologies for the long reply- it’s difficult to know how much detail is useful- good luck with Issaac.
Best wishes
Joanne
That is so wonderful to hear about Isobel. We have also been thinking very seriously about the clinic in Austria and as you most of the professionals involved with Isaac have not been keen at all. How did you find out about the people who have been. We have seen it on the TV about Tia on the “Little girl who never ate” program and more recently there has been a little girl on our local news who has been she isnt a tof but was nasal tube fed and is now eating solids. She came back from the clinic eating wotsits and yoghurts and drinking. She had her trip funded by a charity which I am trying to find out more about. It is only really our surgeon community nurse and especially our dietician that seem to be supportive about reducing his milk. I feel more confident in taking the gradual approach after being in touch with you and seeing that it can potentially work. As you know is so hard trying him with tasters every day when he doesnt really want to even though you know you have to do it. We do go to a group on a Thursday that does include some play with food. Speech and Language used to run a play therapy group but felt it was too much hassle to continue as people didnt turn up which is really disappointing for us as I feel it would be really good for Isaac.
Isaacs tube is gastro-jej mickey button. We feed him overnight at the moment for about 13 hours and I have been giving him two small gastric feeds in the day to try and make him feel hungry but am now wondering if that is the wrong thing to do. Does Isobel drink? If so when did she start doing that?
How is Isobels development? Has she only just started walking or did she just stop due to being ill. Has she had the Nissan? Isaacs surgeon is suggesting that he has that within the next 12 months.
sorry to bombard you with lots of questions. Hope Isobel contiues to improve. Sorry for my long reply too.
Isobel initially had a colon interposition at 7 months old to join her long-gap as she had a very long gap and we decided to go for replacement surgery rather than waiting to see if it would grow. She initialy sham fed well orally with an oesophagostomy but due to other surgical complications, including a recurrent fistula at 6 weeks old and bowel surgery at 4 months old, she bacame orally averse and stopped drinking altogether. Following her replacement surgery she was very ill,developed chronic lung disease and suffered from free reflux up her ‘new’ oesophagus, so she had a set up similar to Isaacs, with a gastrostomy and jej tube combined. She didn’t start drinking again until she was over a year old and that was following a bowel infection when she was nil by mouth and desperate for a drink- and even then it was only sips. She suffered frequent reflux particularly at night, and after recurrent chest infections, we kept her gastric button on free drainage overnight and fed her only via jej. After a rough winter she had investigations into her reflux with a view to a fundoplication/wrap of some kind, but sadly we found out that her colon interposition was tortuous and had grown excessively and could not be repaired. She then had surgery last September to remove the colon interposition and replace her oesophagus using a stomach pull-up (gastric transposition). She had basically eaten licks of puree only and sips of water prior to that surgery, and afterwards she started eating small amounts of yoghurt/puree and drinking more than she ever had before. Her reflux/vomitting seems to have been much improved as the valve at the bottom of her stomach has been opened up, as her stomach is now in her chest, so drink and diet passess through her stomach quite quickly.
I think that reflux affects tofs children in a number of ways and certainly in Isobels case contributed to her oral aversion, but they are all so different.
In terms of her development, she has always hit her milestones at the upper end of normal which seems to have been due to prolonged hospital admissions, numerous surgeries and illness with her chest, as opposed to any underlying developmental delay. Following her last big surgery in September, she made a good recovery and was stating to eat and drink, and then she got RSV and ended up in hospital for 10 weeks and ventilated for much of that time, so her walking and physical deveopment has been delayed due to that. She’s had physio and orthotic shoes in the past, but all I can say is that if you saw her now- literally running around and chattering for England , you would not believe she has been so ill. Our kids are so resiliant!
With regards to Graz- we first heard about it from the same tv programme and we have read a lot of family testimonials on their website and have found links to another families blog who have been. We were also put in touch with a family from Yorkshire by our speech therapist, who went last year ,with their son who was 6 I believe. He was not a tof but had never eaten and was gastric tube fed. They had been told that there was no hope for him to ever eat,had had surgery which was unsuccessful, and was suffering from severe vomitting after all his bolus feeds. They met the proffesor from GRAZ at Great Ormand Street and went as a last resort, but were not supported by his surgeon and funded the trip themselves. He has had a complete success and has taken all his diet and fluids orally ever since. I have spoken to them and obviously they are very enthusiastic about Graz as it worked for them so well.However they did say that it is a dificult progress and can be distresing for the children. I believe that surgeons at Great Ormand Street are recommending it to some tof patients and are funding some cases to go. However when we broached the subject with our surgeon, he did not share our enthusiasm and had experienced children who had been and for whom it had been a distressing experience. It’s so difficult to know what to do for the best. Our surgeon did say however that if we wanted to try a more drastic ‘controlled starvation’ approach with Isobel, he would support us to do it here under his care rather than go to Austria. Our concerns are that we would not get the same level of multi-disciplinary expert support here that Graz would provide. Anyway we have been pleasantly suprised by Isobel’s current progress with the gradual approach, so are glad that we followed his advice to try this first.
It sounds as though you have a supportive team.Maybe Isaac just needs to knock off his daytime feeds to kick start his appetite- we found that made a crucial difference to Isobel. I can’t emphasise enough that Isobel is still at very early stages of eating compared to a non-tof child, but as you know the tiniest steps forward are so important to us.
Please let me know if we can offer any further support- the tofs office have our number if you want to speak in person.
Good Luck
Thank you very much for you reply. It has made very interesting reading and must have taken you ages to compose! It has spurred me on to keep going and I will give it a go about knocking off Isaacs day feeds I will also talk to his dietician regarding reducing his milk even further. It was also interesting learning about Great Ormand Street and how they are recommending the treatment for some patients. I have tried to say to Isaacs speech and language therapist that I would rather do any treatment here rather than in a strange country but the just dont agree with it full stop. Maybe I should talk it over with his surgeon.
I will get in touch with the tofs office for your number and be in contact soon. Thankyou again for your response it means a lot to me.
How’s Isaac getting on? Isobel’s about the same-appears to be holding her weight, and gradually trying new things to eat-latest Heinz fifi pasta half a tiny tin for tea today- the power of telly branding! Still on 600mls feed overnight. Some days hardly eats a thing!
Sorry Ive not had chance to get your phone number yet from the tofs office. We have been away for a few weeks and been ill. Will get it soon promise. Isaac is much the same at the moment too. He is on 900mls overnite but has been showing a bit more interest in what his brother is eating. Not enough to start doing it himself and he will now seem to let me put food on his lips, not in his mouth just on his lips and every now and then will put a spoon with food into his mouth. We are having trouble with him at night at the moment his reflux is bad and i have had to aspirate quite a lot lately. I have not been able to see the dietician or speech and language as had to cancel last appointments as I had suspected swine flu. Luckily didnt have it just another flu and managaged not to pass it on to kids. Cant get appointments with them until middle of September but feel confident that the dietician will support us in trying to reduce the milk further like you have. One thing I have noticed though is that his development seems to have come on and I am convinced its with reducing the milk a little and that maybe he was being fed too much for him. Probably nothing to do with it but it seems that way to me.
Anyway glad that Isobel is still holding her own and trying different things. At least she is trying even if its only small amounts. Is the plan just to keep her at 600mls until her eating hopefully increases? Its such an inspiration to me and gives me confidence in putting things into action with the dietician.
Cant wait to actually speak to you and will get your number soon. Isaac is going to start nursery for a few hours in September so I will try to phone then when I have to house to myself
Sorry to hear you’ve been unwell. I have too so hadn’t been on the forum for ages either.Hearing about more and more people having swine flu- Isobels big brother Dylan starts school in September, and I’m dreding what bugs he’ll bring home. Isobel is so vulnerable with her chest, but she’s having the RSV injections staring next month and will get her the flu vac as usual, and the swine flu vac when available. Don’t know what else we can do except avoid big gatherings of peope and obsessively wash hands- I shoud have shares in Milton hand gel!
It would be lovely to speak sometime, but don’t worry when- I know how busy family life is!
Just a thought on Isaac having licks - does he like ice-pops?
We found that was one of the first things Isobel tried after her oral aversion started to improve.The toy story ones from sainsbury’s always go down well- more branding!
I have been worried too about what bugs Jacob would bring home but luckily so far we have managed to keep them seperated when Jacob has had something and the only thing Isaac seems to have picked up from him is colds which he has handled quite well. I didnt know that you could still have the RSV jab at this age. Isaac has only been offered it the first winter out of hospital. Mind you his appointments with the respiratory Doctor have been cancelled on more than one occassion and when I do get to see him it is usually his registrar which is no use. Dont know about you but find it a bit of a waste of time seeing registrar they never seem as thorough. In saying that he will always come and see him if he is on ward.
Isaac started nursery last week. he had his first full 2 1/2 hours last wednesday which went ok but at the back of my mind i am worried about what he will get from there but everyone seems to think it best for his development. He hasnt been able to go today though as they have get a sickness bug so advised me to stay away. Great start but at least they have warned me which is good. Does Isobel go to nursery?
Isaac has had really loose bowels for the past two weeks. His bum is really sore he has been fighting me to try and stop me from cleaning it and it is red raw. We have been up some nights just changing his bum every hour! He has stages like this where his bowels are really loose. His nurse has spoken to his surgeon who may alter his domperidone when we see him on thursday if it is still the same. We have tried altering his feed to petisorb which made things slightly better but not enough to change it for good. We have also had to put him back upto 1000mls as he has lost a lot of weight.
We are seeing Sean Marven on Thursday about Isaac possibly having the nissan fundiplication (not sure if thats spelt right) He has been talking about it for the last year but Isaac has been too well upto now. Will let you know how that conversation goes.
Anyway on a better note Isaac actually asked for potato off my plate and started to try and put it in his mouth. We were all at the table trying not to look at him but panicking in case it did go in. Then he started on a pea teasing us at first by licking it. Then it did go in!!!!!!!!!!!!!!! Fortunately he didnt swallow it just started gagging to get it out of his mouth but at least it went in and he put it there and it didnt get stuck. At playgroup he also put at big spoon of yoghurt in by himself so the signs are starting to look better. Im a bit more hopeful that once we can start bringing his milk back down he will start and try more. Will try the ice pops thanks for the tip.
Well that enough about us again. How are things going with Isobel? Any more progress? How has Dylans first week and a bit gone at school I bet its been strange. Did you cry? I did when Jacob started. I bet he looked cute in his uniform.
Hopefully give office a ring Friday to get your number. Are you going to conference in October? Where do you live? We are in Sheffield.
Hi Diane
Good signs from Issac that he’s keen to put food in his mouth. How did the meeting with the consultant go? We’ve been away for a few days in the Lakes and then Dylan started school this week which he seems to be enjoying. Isobel continues to try different foods- some with more success than others. We’re seeing her speech therapist and dietician in the next week so hope to get a plan for moving forward to cut her milk feeds more, but it depends on her weight.
We can’t make the conference unfortunately. Are you going? We live in Leeds- it would be nice to try and arrange to get together with the children when everyone’s well. I’ve left a message on your answerphone today with my telephone number,so hopefuly we’ll get the chance to chat soon.
JBye for now
Joanne
Sorry for butting in, but I’ve just posted another thread (“Anyone had a baby that never ate before 1, 2 or 3 years old?”) and it’s only after that I discovered this one which answers a lot of my questions! I wanted to say thank you for taking the time to write a lot of the details of your experience with your children, what’s working and what’s not. Your situations look quite close to ours so far (Aidan is only 9 months old yet) and it may sound awful but it’s good to read that we’re not alone! I was beginning to feel like our boy’s situation was pretty unique and severe for a TOF, but I see others have been there before and are coming out the other end “fine” and it gives me hope!
