Hi - I was wondering if anyone had any experience with problem eaters? Luis is 17 months and has had his trachy since he was 4 weeks old and has never had much of an appetite. He has been having overnight ng feeds since he was 9 months as his weight had really tailed off, but even though we can (just about) maintain his weight this way, I can't help but think that having another 'obstacle' can't be helping his eating. He loves food but he won't swallow anything, he will chew everything put in front of him but then spit out. His milk is his main source of calories but if he has 50ml in a sitting we consider it a success. It's such a huge thing for us, I know most parents worry about their child's eating, but I find it really difficult to relate to anything in the 'normal' baby books - they don't do a Toddler with Trachy Taming book! Can he feel the trachy when he swallows? Is it the ng tube? Is it the stressed out parents (although we weren't too stressed until he stopped swallowing!)? Or is he just a fussy (non) eater??
Despite all this, he is a very happy and otherwise healthy little boy and has plenty of energy - somehow. If anyone has any experience in this area it would be much appreciated.
Many thanks - Helen x
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Hi Helen
Are you seeing a Speech Therapist at the moment? They should have experience with looking at a child's swallow and feeding issues as well as speech so may be able to give you some help or suggestions. If your SLT doesn't have much experience with trachy children she can contact one of our Associate SLT's for advice.
Hope you get some more ideas from other parents who have experience of this!
Sam sees a speech therapist who specialises in dysphagia (swallowing). She observes him eating and arranges swallow studies at the hospital (they can actually video the child eating). Sam only eats yogurts and runny deserts, everything else goes in his gastrostomy. Another thing they do locally here is have a playgroup with lots of kids who don't eat and they 'play' with food as a therapy. They will hide small toys in cornflakes or jelly or something. this is more of a sensory thing - Sam was very orally aversive and has only just started eating after 4 years of being totally tube fed. On another note, a speaking valve can assist with swallowing too does Luis have one?
Hi Helen,
Could have almost written your post myself a couple of years ago. My son Dominic had his trachy at six weeks, and by six months required an ng tube also as he was failing to thrive (horrible phrase that). The ng tube sorted the weight gain issues, but resulted in complete oral aversion. He pulled/ vomited his ng tube up frequently and all the repassing of the tube really did not help his feeding skills one bit.
He's just turned three and although he certainly does not the healthy, organic diet I would love for him, he is managing to gain weight without a tube. So, here are my tips:
1) Try and relax and not stress about the feeding. Make meal time fun and give lots of food to play with. Have your meals with him too. Dominic always hated "messy" foods so dry food is often best (multi cheerios, tuc biscuits, quavers worked for us).
2) Reduce the amount of formula you put down the ng tube (although run this past your medical team first obviously). Making Dominic hungry slowly made him eat. Also, try and give food that is as calorific as possible (mascarpone blends great into purees etc). The idea here is that even if Luis only takes a few spoofuls the link between eating and getting full may be formed.
3) Distraction - we used to feed Dominic in front of the TV. Not ideal I know, but we figured eating was better than not. Special toys that only come out at mealtimes worked well too.
4) I investigated feeding clinics, there is no such thing in the UK currently, but when things were really bad I did push for a referral to a clinic in Austria (http://www.kinderpsychosomatik.at/)
There is some good advice on their website too, as there is on the GOSH website (sorry, can't find the link).
5) As well as a SLT, it is also worth considering asking for a referral to a child psychologist with experience of children with feeding issues.
6) Have you considered a gastrostomy. We very reluctantly opted for one when Dominic was just over a year. It did mean one less horrible thing happening near his mouth. When you think about it, ng tube passing cannot feel very nice. It's also safer overnight too when on a feeding pump.
7) If he eats if feed it. We had many months of Dominic just eating yoghurts. (julie, there is hope!)
Anyway, have already written far too much. The not swallowing sounds like it may almost be a game. I'd have thought if Luis had a swallowing problem he would choke etc, rather than spit it out, but then I'm not an SLT.
Good luck!
Laura
PS: If you want any further info I'm sure Amanda will pass on my email to you.
Sorry, forgot my password for the above post, hence posted it as anonymous. Now reset and all well.
Laura
Hi - emily had her NG tube until 12/13 months old. There was no doubt at all that having it in put her off eating significantly. Whenever it came out she would really give eating a go. It was really quite hard since with the tube in she got sufficient calories but wouldn't eat, but without the tube she was so unused to eating that her weight dropped right down because her oral intake was so poor.
If it's worth anything - our dietician told us that after the tube came out it would be at least 6 months before emily would move towards "normal" eating. It's now been 10 months and it's only in the last 6 weeks that her eating has become easier and not a daily struggle.
Hi, i have just read your letter and hope that I can offer some help! My son was born nine years ago and was unable to feed orally because his breathing was so badly affected.He was given an ng tube immediately but was only able to tolerate tiny amounts at a time because he suffered badly with reflux and would vomit afer each feed. It would take an hour for him to take 60 ml and then he would throw most of that back! He didn't get his trachy until he was 7 months old, at which point he came out of hospital and at 15 months was given a gastrostmy and a fundoplication to combat the reflux. We always tried him with yoghurts, gravy,sauces etc but he never swallowed much (maybe one teaspoon) and most of the time nothing. He would suck the flavouring off skips, quavers and dorito's but never ate them. He had had a video flouroscopy so we knew that there was no physical reason why he wasn't swallowing, it was definitely a psychological problem. I honestly think that because he was getting his nutrition via his PEG, he just wasn't hungry and therefor was unable to make the link between food and physical need.Every so often Max was unable to tolerate his milk for no apparent reason and would just have water for a couple of days before tolerating the milk again. The last time that this happened was two years ago. Max was 6. He had started to eat the odd munch bunch fromage frais but not on a daily basis but nothing more.I decided that rather than just start his milk feeds again I would wait to see whether he got hungry.On the third day, he asked me for a fromage frais, ate that and then asked for another immediately aferwards! I then thought 'right thats it,we're not going back'! and we never have.From there I pureed everything,and only gave him the milk feed overnight via his PEG to keep up his calorie intake. Thankfully, his weight remained stable and we were able to stop the overnight feeds eventually but continued to give him water via the PEG because he was reluctant to drink still.It's taken a long time but Max now eats a normal diet and drinks well, his PEG has been removed. I never thought that he would eat, and to watch him enjoy eating now is amazing. Don't give up hope, just keep trying little bits and I think you will notice a change when Luis starts school and is surrounded by other kids eating. He'll want to be the same!
Just wondered if anyone else had any experience of the specialist clinic in Austria The Kinder Psychosomatik clinic? I believe that the costs to attend the clinic are around 5500 Euros per week so VERY expensive - since there is nothing similar available in the UK, does the NHS fund treatment if a referral is made in the UK? If anyone knows anthing that could be helpful here I would be very grateful, as we are in contact with a family who are currently trying to raise the money to attend the clinic in Austria so if there are any alternatives I am sure they would be very grateful to hear about them. Hope everyone had a lovely Christmas and that 2009 is being a healthy one so far!
Amanda
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