Any advice on eating please?

[claw3]

My ds is 4.5 years old now. He suffers with modulation disorder, a sensory disorder. His diet consists of:

8am honey hoops with no milk
12pm 1/4 of chocolate spread sandwich no butter
3.30pm grapes,yogurt
6pm 1/2 chocolate spread sandwich
7pm honey hoops with no milk

This has basically been his diet for years, since he was able to eat.

Does anyone have a similiar problem or can offer any advice on how to add some new things to his diet?

I have just found a great website and found this, Im going to give this a go with ds

Treatment goes like this: Practice using a toothbrush or wet wash cloth rubbing it on his tongue. He can do it himself actually. After a few weeks, pick a food that doesn't make him scream. Tell him to pick up a piece of the food and throw it in the trash can. The next day throw 5 pieces of it in the trash can. Make it a game. The next day, 10. Do this for a week. Then pick up that food and "kiss it goodbye" then throw it in the trash can. Do this 10 times each day for a week. Then hold the food in his lips and spit it (as far as he can to make it a game) into the trash can. Do that for a week. Then put the food just inside the mouth and spit into trash can.10 times every day for one week. Then put the food in the mouth and move to the other side of the mouth, then spit10 tiems a day for one week. Then move the food back and forth two or three times inside the mouth, then spit. Then move the food back and forth two or three times inside the mouth, bite and spit. Then move the food back and forth two or three times inside the mouth, bite, and move to other side of mouth, bite again, then spit. Yes, 10 times a day for a week each new step. Then finally move to swallowing. Give prizes for each success.

Thanks Alfiemama sounds like a really good idea. Only problem for me would be my ds wont even touch food that isnt already on his 'ok list'.

Hi Claw

Yes unfortunately that is the problem I am having with Alfie, had a little success though. Got him to lick a baked bean. I know doesnt sound much but I know you will understand . I think it was on a site called [www.fussyeaters.com] you never know there maybe something useful on there for you.

x

Morning Alfiemama - Thanks a million will check it out. Im desperate, in a no win situation at the mo! Because of his disorder the only food he will tolerate has to be sweet basically. (apparently sweet is the most tolerable for kids who are over responsive to taste). He is also orally defensive so brushing his teeth is a nightmare. Sweets - limited brushing, as you can imagine, his teeth are starting to suffer.

If i dont let him have anything sweet, his diet would consist of fruit and he would lose weight drastically, like he did before when i stopped sweet stuff.

Great stuff with the baked bean, i know exactly what you mean, its brilliant progress. Do you think putting a food onto a fork 10 times etc, then progressing to touching it would work?

Oh Claw, what a nightmare, I can totally understand your frustration, I think they have us over a barrel with food.

I would say its got to be worth a go, sorry just remind me is he under a dietician? I am hoping when Alf has his paed appointment he will refer him.

But yes back to the question, I would deffinately be trying to work on getting him to touch it first, before moving on, otherwise I would think it would be too much for him. Poor love

Oh yes definately, 2 choices starve or bad teeth!!

He was under a dietician 3 years ago, for about 1 year. At the time we had no idea he had SMD. So the dietician thought it was me letting ds get away with murder. His advice was to only offer food that i wanted him to eat (like i hadnt already tried that a thousand times before) but did as he said starved my kid just to prove a point! 2 weeks later when ds hadnt eaten a thing and had lost lots of weight, he did a quick u-turn and advised us to let him eat whatever he wanted and reffered us to CAHMS. I have asked to be referred back, cant wait to see the look on his face he he!!

Apparently dieticians only deal with it, if it is a physical problem, ie something physically wrong with them stopping them from eating. If your Alfie has sensory issues, oral defensive etc, your best bet might be OT/SALT who is sensory qualified. But give the dietician a go, cant hurt.

I will give it a go, with a fork, worth a try at least

Let me know how you get on Claw, fingers crossed.

Didnt know that about the paed, I think Alf deffinately has sensory issues, hates having his teeth brushed, or hair combed, loves fluffy cushions, the lot really. He does has a real sense of fear with food, we used to be under the HV for his food, and she tried her best but he will literally starve also, think she realised out of her depth really. Funny she never suggested asd grrrrr, they never picked it up, even though he flaps his hand profusely (still a bug bear to me).

Good luck Claw. One thing I did with Alf, because he couldnt stand touching, and if something spilt on him, well crikey, total melt down. But I would purposely get a yoghurt and put it on my nose, then after a while, put it on his (you have to take it very slowly though) then put it on his hands.

He still hates it but will now touch food, wont put his fingers yet in mixture, but working on that, even though he loves to bake, my dream is for him to lick the baking spoon. I can live in hope. And the day he eats a Sunday Roast, I think I will sob.

LOL @ roast, wouldnt that just be the best thing ever.

Sounds very similar to my ds, food touching his skin and well spiders, highly hysterical, you would think someone was murdering him!

I think i have a site bookmarked where they have a list of sensory issue related behaviour which you could tick off and take to appointment with paed, if you would like it let me know.

The paed is definately the best person to refer, asked to be referred to dietician, OT (sensory), SALT (sensory), you can never have too many people on board!. I had to wait over a year for OT appointment too.

Good luck to you too

Hi Claw

Yes please, that list but would be fab.

www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html just scroll down a bit.

The list is intended for Sensory Processing Disorder, dont let that put you off. Often children with other disorders have sensory overlapping issues if you know what i mean.

The list is just a sensory check list, which you could use to explain to Paed. Often if i dont have it written down i forget half of what ds has problems with, he has soooo many.

Hope it is of some use to you anyhow

Thanks Claw, I will have a look Im sure it will be.

Just tried www.fussyeaters.com, i dont think thats the one you found

Sorry Claw

its this

www.fussy-eaters.com/