Monday, June 25

The New Teatimes

After last week's ultimatum on the eating things front, I have been doing a lot of thinking (and encouraging of biscuits). I do "get" the problem and seriousness of the issue at stake, but I am loathe to chuck a lifetime of being taught about good eating habits out the window. Am I being naive? Is this "for the sake of a few pounds and ounces" attitude in fact not facing up to the severity I am presented with, or am I making a big deal about what should be a no-brainer: doing the best for my daughter. The trouble is, in this arena I don't know what IS best for her. My gut instinct, my protective instinct says not a feeding tube. Continual changing of an NG tube would only be enforcing trauma I'd imagine, especially on a child with a proven track record of being very sensitive to procedures and it impacting on her feeding and sensory acceptance. Any child would quarrel about having something put down their nose, but on one that has already endured more than she should, it just seems cruel. Which leaves us with PEG feeding, or a gastronomy button. I am nervous about Wriggles having an operation; going under general anaesthetic on a ventilator. I know she is older now, hardier, sturdier, more robust, but it still fills me with fear. She is my baby, after all. So that leaves lots and lots of eating. We will soon be switching more high calorie nutritionally complete milk to super-high calorie nutritionally complete milk which we are all hopeful will make a difference. Although they have improved indescribably, Wriggles' eating habits are still so pitiful to attribute to her weight gain, that we have been told we will have to rely mainly on the milk for increasing her weight. Obviously whatever (fortified!) solids I can get into her will be a bonus and only enforce a positive image of feeding for her, but the message was that the focus should be on the milk and calories, calories, calories.

I am struggling now.

It seems so counter-intuitive. But is that because I am subconciously comparing Wriggles to other babies who have had the good luck to tread a more straight forward path? Am I not accepting that we need a change of tack to make some headway to get her onto that path? Am I somewhere just digging in my heels in the desire to have some grasp of normal that I know and understand, when we have deviated somewhere else? I no longer know at all.

The problem is not Wriggles being small and light. She has never been huge, and both sides of her family are on the short and slight (well, a bit wobbly round the edges once cake is discovered) side, so that doesn't concern anyone. The problem is that she is seeming to struggle maintaining weight whilst becoming mobile and exploring food. Both these things are to be expected, but the unexpected twist has been a continual slide from centile to centile. One, is a shame. Two is more frequent weigh ins. Three is really taking the biscuit (I wish!). She is pretty much the same weight she was six months ago, despite taking in more calories overall. If mealtimes (any food and milk combined) took any longer, they would quite literally run into each other. If I limit them, she does not get nearly enough to keep her going and snacks run into snacks running into get the picture! She has always struggled with volumes, which is were it makes sort-of-sense to think about an overnight tube top-up feed.

What would you do? It seems so funny just when we are beginning to have a breakthrough in curiosity and acceptance and dare I say, enjoyment, of food, to sideline it for the high calorie drink. Concentrating on milk, as opposed to exploring solids in a growing child seems just so topsy turvy. The food aspect is limited as Wriggles still struggles with so many textures and although is gaining in curiosity, will not entertain a vast number of foods. Cheese, marscapone, cream, avocado, nut butters, much I still have had no success with. Not that I am giving up that easily! So far, the best success we have had is buttered hot cross bun and a sweet potato wedge (just the one. She takes VERY small mouthfuls). I have a list of ideas longer than my arm to try, it is just finding one, or maybe more, that sticks. Wriggles, would eat crispbread or Quavers until the cows came home, but unfortunately they are mainly air!  
Would having a tube allow us more room to manoeuvre with food? Knowing that by hook or by crook, the precious calories will go in, will this free up time to play and explore food in the daytime? To take the pressure off? Or will this confuse the issue by meddling with natural hunger and feeding patterns? My other hesitation is forgetting about healthy. I don't want to "fix" this with say, cake, only to have the issue drawn out years down the line trying to then get a 5 year old to look a pea in the....erm, maybe not exactly the face. My current compromise is a full fat yoghurt or custard accompanied by fruit or a fruit/vegetable puree! But again, am I just not getting it? Are the medics being too cautious or am I not cautious enough? She is still (just) on the growth chart. When is the cut off point when enough is enough? Are we really staring it in the face? How can we be when she is still so full of beans?!

Any advice would be gratefully received. It seems so complex to me and yet to the doctors is so very black and white. I am hoping against hope that these mad ramblings turn out to be just that; ramblings of someone with an overactive brain. There is every chance that we might just stay on that curved line on the graph and buy us some extra time. Better still, Wriggles might prove them them wrong again. Maybe, just maybe, Wriggles will develop a goat-mentality overnight...


  1. I really wish I could offer you some advice, I can't imagine how difficult this must be. I really wish you the best of luck in getting through this; I'm sure you will and one day you'll look back on this and wonder what you were so worried about. The best advice I've had as a mummy is to go with your instinct, if it doesn't feel right, don't do it. But that's got to be hard when healthcare professionals tell you otherwise.
    Is Wriggles teething much? We find our daughter eats more when she's teething because she wants to gnaw things - crusty French bread and dried fruit being particular favourites.

  2. It must be awful for you. Fortunately Bob is a good eater do I cannot offer any advice. When she was ill there was talk of using a tube an that terrified me. Luckily she discovered Haribo. I wouldn't beat yourself up over healthy eating habits. I'd say that any food is better than nothing at all. As a teenager I hardly ate any veg and now I love it. Tastes change so I wouldn't worry about the peas face. :0) Swnding scoffing vibes your way!!! x

  3. I don't know if this is any help or not because I only have the very vaguest, tiniest hints of loss of appetite in Adam and that's only when he's sick - so I understand this is absolutely nothing to what you go through with Wriggles. But a couple of months ago when a tummy bug stopped him eating at all for two weeks and I was starting to get really worried, my health visitor came to see him. She told me that for brief periods, when a child just desperately needs calories, there is absolutely nothing wrong with feeding them chocolate, cake and whatever other unhealthy, high calorie food you can get into them. (This was of course after the vomiting had stopped and he just needed to recover strength and weight I hasten to add!)

    I objected because I've always been determined that he will learn healthy eating habits so I'm far more likely to give him a healthy sweet than a sweet sweet if that makes any sense. Her logic was that sweets like chocolate, chocolate milk and whatever other high calorie unhealthy food you can get is more likely to be accepted because it tastes good and in the short term, if it gets weight onto them it's worth it. Then long term, when they've recovered their weight and doctors aren't being quite so worried, you can keep working on slow introduction of healthy things.

    When Adam would eat toast but nothing else, I started putting some Nutella spread on it (not for nut allergies!) and then he ate it with some extra calories. I have no idea if any of this is any help with an orally aversive child but I can't help but think that unless there is no other option, tube feeding would be a backwards step simply because it would increase the trauma. That said, I'm no doctor and if genuine starvation is a risk then a tube is better than hospital.

    I do hope and pray you find a solution that works for you and Wriggles. x

    1. Thanks Charlotte. That is what our dietician said; I think I am going to have to trust her! It is just so scary throwing away what you thought you knew and putting your faith in someone (albeit very clever and professional and has seen such cases before...) hoping that that sorts things out for your child. Gah! x ps. nutella so far no success with BUT did have success with Philedlphia today. Whoop!!!

  4. I'd say save the feeding tube as a very last resort for the reasons you suggest.. Even though she's dropped a centile it's important that the health professionals take in to account the reasons why, it's not because she has become more aversive to food, it's because she's coming on in every way, she's crawling, climbing, experimenting. And it's fantastic that she's not seemingly unwell with the change.
    Have you noticed she eats more after a tiring physical activity? If she does that's a really encouraging sign that she's regulating herself well and making sure she sustains herself 'relatively well'

    1. Thanks hun. Unfortunately, no she is showing no signs of regulating herself either by hunger or thirst after being extra tired. She is more willing to drink after being sick but that is about it! They have been taking into account the reasons for dropping centiles sadly and were happy to wave the first, and to an extent when she dropped the second, but we are now on the third consistently dropped blooming centile for weight and although she is physically well, she is beginning to look a bit like a bag of bones and her height etc is now dropping too. But it is fantastic she is not unwell and is willing to try more! Who knows, maybe she will pick up or this new milk will do the trick. Fingers crossed :)

  5. Have been thinking of you. Don't know what to say though. I am lucky that Gemma was not orally aversive. She was very slow to learn to be hungry and to eat what she needs but getting rid of the NG really helped her regulate herself.

    I agree a tube should only be a last resort and think an NG would be detrimental to the hard work you have put in with the oral aversion. Although an op is not ideal either and I would really struggle with the thought of that personally.

    I wouldn't be frightened to try and sort with cake. At first we were told not to worry about healthy or routines just get the calories in with cream,cake, crisps etc. I now still struggle to not keep offering chocolate to get the extra calories in. If I ask would you like anything else the answer is now "cake", oops!

    It is only now, after 5 months off the tube that we are to focus on mealtimes and healthy eating. If she doesn't eat her main meal nothing else so that she learns I won't always have a stash of cheese and chocolate if she can't be bothered with what I cook... Not 100% sticking to that as hard habit to kick! But she will now eat at least 1 decent meal a day and eats fruit and yoghurt very well.

    The dietician said there was plenty of time to learn about a good diet once can get her eating and if it stops tube feeding ...
    Anyway, reason for the post was I thought about you when I saw a post on Facebook "Has anyone had a child sensory issues/oral aversion who is FTT (with no other known medical issues) who has gotten a feeding tube? A momma in this situation is looking for pros/cons? Do you regret the decision? Are you glad you did it? How has your child benefited?" - some interesting comments and people you could speak to. It is on the "Feeding Tube Awareness" page, try this link.!/FeedingTubeAwareness


  6. Hi Amy - my Amy was 20 yesterday! We have no experience of oral aversion, but she was always a slender delicate flower and I was very keen to encourage a broad diet but also to keep the calories up, especially as she was lactose intolerant. Altho I was very relaxed about cake, biscuits, etc (and I positively refused 'diet' squashes because I don't like artificial sweeteners,) we did do a lot of home baking (often together). Amy has grown up still slender and a very healthy eater. So I would chill about the healthy eating bit and perhaps just go for the calories for now. Any way you can! Wriggles is making progress, just not as fast the medics would like. You're doing a great job.