(long...) Sensory Issues / Food Aversion - Has anyone successfully conquered these

[OpheliasWeepingWillow]

My dd (2) is tube fed because of a milk protein allergy and she would not drink Neocate. Up until about a year she would eat minimal amounts of food and she would drink milk.

Now she only drinks water and everything else goes through the tube.

Numerous biopsies have shown some allergic colitis but no eosinophils. Her consultants have concluded she does not eat because of her sensory problems. She HATES sauces, purees, grass under her feet, sand etc etc. Messy play results in screams and vomiting.

She's been having daily sensory therapy for two months now and progress is so slow. She will now poke apple puree with a spoon sometimes but at the first sign of upset (teething molars right now) she vomits at the sight of food or when she seems someone else eating.

We live abroad so all therapy is private (and very expensive, not covered by insurance) and I'm not sure where to go from here... If she could only drink juice it would be amazing!

Does this seem familiar to anyone? It's very hard to see her so held back by these issues.

[Redoubtable]

Yes it's not uncommon in children who have been tube fed for extended periods as they miss the developmental 'window' for messing with food and becoming adapted to the sensory challenges.

First, release your own anxiety and tension. She will pick up on it even if you think not. She will be ok and in time ti will improve. But allow time.

You need to think what happens with a typical 6-12month who is learning about food...lots of messy play, food on hands, in hair, on table, little amounts getting into the mouth.

Give her lots of sensory play with her hands....a bowl of uncooked rice in a big bowl, pouring it, spilling it, handling it. Ditto with sand, 'gloop', shaving foam.

You can get bath stuff that turns bath water into a gel...have her bathing in this and adapting to the sensory demand.

And when she is being challenged do step by step...i.e. first step is for her to tolerate food in her vicinity, then on the table with her, then beside her, then on plate......all long before it comes near her hands or mouth.

Lots of reassurance...its ok, all is well.

If she is becoming distressed heavy work is a good counter to sensory challenges.

HTH

[OpheliasWeepingWillow]

Thank you for replying.

Am a bit (a lot) discouraged. Every time we have teeth coming through or illness it all flares up again and we are back at square one.

Now the feeding therapist says she has done all she can I need to do the work at home with DD every day. Cheaper but if I knew what I was doing I would have done it by now

Am googling recipes for home made playdough and and now need to put a 'curriculum' together to fit around working full time. This is the THIRD therapist who has basically said 'sorry, she'll grow' out of it one day... see you...

Any ideas what I can do?

So far I have:

Playdough
Sandpits (one near us, is fun)
Sensory boxes
'Pouring' sauce while playing songs
'Feeding' her teddies
Having at least two 'meals' a day with DH and I.

That's my list so far. Not great is it? How can I encourage her to even taste juice?

AAAAAAAAAARGH.

[claw2]

My ds is extremely restrictive with food and has many sensory issues, which have affected his health etc, but not tube fed.

As a baby, he would only eat pureed apple and drink milk from a bottle. He stopped drinking milk, when he could no longer drink from a bottle. Then survived on finger foods, such as crisps.

We have been seen by various specialist over the years and been told similar 'sometimes you just have to accept this is as good as it gets'

He is now 10, he hasn't 'grown out of it', his diet has improved slightly over the years, he will accept about 5 foods (refuses to eat in school at all). He sees a therapist weekly in school and she prepares menus of food, with pictures for him to try at home, BUT he has to be very much in control of preparing the menu and agree the foods on it first. He cannot stand to be around others peoples food or to have their food near him etc.

He is able to express what worries him about food to a degree, for him number 1 is appearance. If he doesn't like the look of it, he will not eat it or touch it.

Colour of food is a big thing too. His diet is very 'beige'. Then texture, no sauces, no mixed textures.

Has the therapist given you a sensory diet to try?

Have you tried visual menus?

Your plan sounds great btw

[Redoubtable]

I dont know what stage you were at with the Feeding Therapist.
As I'm an OT, I tend to see the sensory stuff first.
So to me, pouring/feeding would be a step along the road, and it sounds as if you havent started.

That was why I said messy play....things like getting the (apple?) sauce and using it to mess with her whole hand across a surfacce. Mix it with food colouring and paint (oilcloth tablecloth is ideal).

Use a variety of 'messy' things like shaving foam, toothpaste, mayo, purees...what you're aiming for is the child who needs a bath when youre done.

[OpheliasWeepingWillow]

Redoubtable After 6 weeks of daily therapy DD can now sit in a room which contains a bowl of apple sauce. That's about as far as we have progressed. Previously she would run away / cry / panic. Not great progress to be honest.

claw2 it's hard isn't it? We do a lot of modelling around eating and she will lick photos of cake and say yum, point to a photo of a biscuit and say 'eat' but won't actually entertain being near the real thing!

[Redoubtable]

Oph thats progress. Not great, in your words, but a step. Pat yourself on the back.

I've had a similar issue with DS...I decided my goal was to have him eat chicken.

Chicken was first in the kitchen with him; then on the table, then beside his place setting, then on his plate, then he touched it, then he sniffed it, then he put it is his mouth and spat it out. That was easily 6 months work (probably longer ... I can remember deciding in spring that I would work on it for Christmas)

At every stage, I told him 'this is where it is today, leave it for 5/10/15 seconds, then I will take it away if you like'. If he asked for me to take it before the time was up, I told him how long to wait and helped him with it (timers all over my house for several years!).
If he waited longer, he got lots of praise.

I'm telling you this to give an idea of how slow I found it. It was relentlessly slow, and upsetting.

[claw2]

It is extremely hard! it has taken us 10 years to get to this point and progress is still very limited and slow, but still some progress is better than none I suppose! Just feels like there are so many areas to address and steps to take, doesn't it. You have to take each tiny step as a victory!

Ds will now sit at the same table as us, while we eat. He progressed from refusing to be in the same room. To sitting on his own little table and chair in the same room. He will now sit at the end of the table, as far away from us as possible, with no one either side of him or next to him. He will only eat, if he watches videos on his ipod, so he doesn't have to see our food or watch us eat.

What does your dd think of pictures of apple sauce?

I assume this is the food you are trying to introduce?

With OT from specialist feeding clinic. We did a book of food, one food at a time 1. Picture of food he would look at. 2. Then look and touch the picture. 3. Then present with the real thing to look at once 1&2 were achieved. 4. Then to smell 5. Then to touch. 6. Then to put to lips etc Was the idea.

We got to 3, then he refused to do anymore. However, we continued with trying messy play, shaving foam in the bath, so he could wash it off quickly, ds helping to shop and just tolerating being around food and generally not having to wash anything off of his hands every 2 seconds etc.

We are having more success now, a few years later.