Saturday, February 25

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.

Wriggles luckily will still take bottles. She has been checked to make sure her swallow function is operating correctly via video flurouscopy (similar to a barium swallow), so it entirely dependant on a high calorie nutritionally complete peptide milk. So far she is unable to drink out of beakers, cups or through a straw-not that she will let any of them go near her mouth! She also has trouble with thin liquids so struggles with water. At present at 17 and a half months I would say that milk makes up about 95+% of her diet. On a good day she will take a few spoonfuls of something, lick and/or hold some finger foods and let me touch her lips with food. On a super-amazing day she might polish off a little fromage frais with some fruit puree. On a bad day, she will do go anywhere near food. We seem to be in a pattern of having a good week or two followed by anywhere between a month and three months of "bad days". Nevertheless we have been able to make some progress on the good days, and she has been able to start mastering chewing and biting skills in these windows.

The best advice and things I have found are the following: try not to get frustrated as it helps no one, offer as many opportunities to be around food especially sensory ones like messy play, let you child 'help' you with your meals (easier said than done at the throwing everything stage) and offer lots of praise and encouargement. It will happen in the end!

I really really hope....

3 comments:

  1. Your advice at the end is perfect! So glad we have found virtual support and others going through this... even if we live halfway around the world, it's good to know we are not alone!

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  2. That must be a bloody nightmare for you but does show good sense on the part of wriggles, soft silicone treats full of warm milky? Yes please, hard plastic something or other being put in my mouth? No thanks. Hmmm.. No flies on you then little lady.. But now you've made your point could you please be good and cooperate for mummy?

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    Replies
    1. I very much agree! Cooperation is the best thing to do. So frustrating to have your kitkat swiped only to be thrown behind the sofa for it's crime of being food!!

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