Oral Sensory Issues/Feeding (my 2.5 year old)

This is my first time on this board but hope someone can relate because I'm starting to get frustrated.

My son is 2.5 & has not eaten ANY food since June..none. He is living on Pediasure 4x a day & juice & sometimes plain milk...nothing else (except possibly a plain vanilla shake here/there in his bottle).

We had him evaluated 2x through EI & he did not qualify. We then were referred to St. Mary's in Bayside. He is now on the waitlist for inpatient & is currently going to feeding therapy 2x a week (through St. Mary's). He's been going about 2 months & in that time she realized he has many sensory issues (particularly w/ his mouth) but he's very fussy about what he wears (only button up shirts & certain PJ's/shoes). We're currently waiting for OT which she believes is the underlying issue for his feeding.

We've had blood tests & surprisingly they've come back normal & he is otherwise very outgoing, friendly, happy & active.

He is not failing to thrive & is gaining some weight although he's at the bottom of the charts (20% in weight).

I just want to know if anyone else is dealing w/ something like this.

I just made an appt. w/ a developmental pediatrician & he's being evaluated there b4 seeing him.

It's just so frustrating (feeding).

He did eat baby food (up to some stage 3) but then at about 20 months just stopped. He then went on food jags eating nothing but yogurt for 3 days & then would eat nothing but vanilla cake for a few days & then go back to the yogurt. He's never eaten food he had to really chew.

yogurt/cake/powdered donuts/banana/veggie sticks/vanilla shake/ice cream/whipped cream/baby food

That was his full menu; never had anything else in his life :(

Message edited 11/10/2011 12:21:27 AM.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

So sorry to hear this, Cindy. DS does not eat a wide variety of foods at all, but he does eat things he has to chew.

Has he ever had crunchy foods? DS was only eating baby food for a long time (he still eats gerber oatmeal for breakfast), but when he did start to branch out to other things, it was only the crunchy foods that he would take.

I think they are not always so good with evaluating the feeding aspect of the oral motor stuff. At our CPSE meeting, when I expressed my concerns about this, I was told to pursue feeding therapy privately, it wasn't something they would work on with him. I was like "wouldn't the speech therapist and OT work with him on this at school?" They were not very supportive at all.

Does he brush his teeth? Drink out of a straw? He may have very low muscle tone in his mouth, in addition to sensory issues going on with regard to food.

Lots of for handling all the helpful "suggestions" everyone gives you too. You can never express to people who don't live it how incredibly frustrating it is.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Posted by dpli

So sorry to hear this, Cindy. DS does not eat a wide variety of foods at all, but he does eat things he has to chew.

Has he ever had crunchy foods? DS was only eating baby food for a long time (he still eats gerber oatmeal for breakfast), but when he did start to branch out to other things, it was only the crunchy foods that he would take.

I think they are not always so good with evaluating the feeding aspect of the oral motor stuff. At our CPSE meeting, when I expressed my concerns about this, I was told to pursue feeding therapy privately, it wasn't something they would work on with him. I was like "wouldn't the speech therapist and OT work with him on this at school?" They were not very supportive at all.

Does he brush his teeth? Drink out of a straw? He may have very low muscle tone in his mouth, in addition to sensory issues going on with regard to food.

Lots of for handling all the helpful "suggestions" everyone gives you too. You can never express to people who don't live it how incredibly frustrating it is.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Feeding is so stressful! I'm sorry you're going through this!

DD is a GREAT eater, DS on the other hand at 4 years old drives me up a wall.

He will only eat:
Grilled Cheese
Chicken Nuggets
Waffles and Pancakes
Vanilla Ice Cream
Yogurt
Pretzels, Goldfish, Cheese Crackers
Cheerios (any flavor)
Fruits

That's it! Forget pizza, pasta, chicken cutlets, veggies, etc.

At family training last week, teacher told me to offer a new food and each night put a piece on his plate.
1st night: Touch it
2nd night: Pick it and "kiss it"
3rd night: Taste it.

Do this for I believe a week or 10 days. It helps a bit, but, he still prefers the above menu.

If your DS qualifies for OT, this may help. Speech as well. Sometimes, DDs speech therapist works on feeding with her too.

I'm surprised EI didn't approve services. That's horrible!

I hope it gets better soon!

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

My son has an oral motor delay and is on a feeding tube. He recently learned to drink from a bottle and will eat baby food but does not like to eat anything that he has to chew. For him its mostly a muscle weakness but because he is on a feeding tube he didn't mouth toys or experiment with his mouth properly and is overly sensitive to anything touching his face/mouth.

We have used the zvibe and a nook brush to help desensitize his mouth and offer lots of different tastes and textures. he will also eat a piece of paper towel in a flash or chew on a washcloth but throw puffs on the floor.

We have had feeding through EI since he had the tube placed but this is only because he also had PT. They told us you only get feeding is you have other delays. I know that our feeding therapist does take health insurance as well as EI.
Our speech therapist also does activities such as blowing bubbles, pinwheels and those birthday blowers to help with mouth closure and movement.

I heard that the St. Mary's program is great-since we have feeding in the home we haven't tried it yet- but are considering putting our name on the list.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Does he gag on food or just refuse trying it alltogether?

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

We had an OT who told us to wipe the roof of DS's mouth with a washcloth three times.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

My nephew went through the same thing except it was with liquids. They had to put liquids into all his foods for a year. It was awful but amazingly 1 day he saw a kid drinking and copied.
Maybe you could reverse it, try really watered down things- yogurt, applesauce, baby food and then if it works start mashing graham crackers and things into it? Also maybe if he sees other kids eating it will spark his attention.
I know this sounds cruel but what about cutting off the liquids and then he will be so hungry maybe he'll eat?
Hard I know, easier said than done- I know. Fingers crossed he'll realize soon what he's missing.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

DS never went completely to liquids, though he doesn't have the best range of foods either. He is almost 4 now, and he has gotten a little better, or maybe I should say he's added some things to his menu that he ate at 1, then refused to eat altogether around 2. Last night he ate the carrots and celery in his soup--I was amazed--he has not knowingly eaten a solid vegetable in 2 years. He has not qualified for eating therapy either--he always had enough variety of textures and foods to satisfy evaluators that he was doing OK.

Mentioning soup, this is another liquid, but have you tried giving him this? Probably broth is best, and spoon it to him or let him drink it from a cup if that's too hard. You can also try giving him smoothies in a straw cup and different things like watered down pudding that will make him work his muscles. All the other suggestions others mentioned help too--blowing bubbles, electric toothbrushes or Nuks, etc.

I would ask for another OT evaluation, and make sure the evaluator is certified to work with children who have sensory issues. It sounds as if it could be sensory, though maybe low tone also.

I know it's not easy. Especially when other people talk about what great eaters their kids are, it's all because I gave them such a variety so early, etc. When children have low tone or sensory issues, I don't think it matters what you offer them, they will struggle with eating.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

DD had feeding therapy for 2 years. It was ironic because she was an excellent eater early on. Like a pp said, our feeding therapy used the technique:
1. Touch food
2. Give it a kiss
3. Hold it between your teeth
4. And, hopefully, take a bite.

Another thing the therapist would reinforce was that you needed to try the food 10 times before giving up. They'd have a mixture of colours and textures each week. It did help DD a lot.
My daughter used to "pocket" her food-keep it in her mouth. That stopped with maturity.
Have you tried smoothies? That was one good way we'd get some nutrition in.
Feeding issues stink! I hope it gets better soon and he starts eating for you!

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

OH WOW...I thought Noah was bad and you have it so much worse. because it is ROUGH to live through it, and I'm sure you have heard, he will eat when he wants to 40506070 times .

I have no advice, except that we got some services through EI for Noah, mostly nutirtionist services as his feeding eval was normal. But he was hovering in the 1-5% percentile for weight, so they gave it to us. He had low tone in his mouth and also was always gagging and we had more then a handful of full on choking events too : (

Now he is in the school district. He has lost 3 lbs int he last yr ( which his old nutritionist said is horrific for a 4 yr old) and is totally off the charts for being under weight, but no one wants to help us. So I let him eat whatever he wants , which is next to nothing ( He had dinosaur chicken nuggets for lunch and dinner everyday for 12 days this month straight) and hope he outgrows some of this. ( but he will eat snack foods, candy etc )

I am so sorry your going through this and my only advice is PUSH and SPEAK UP and demand help. Sounds pretty severe to me, and once he reaches 3 and the district takes over, they are IMO not as eager to offer help in any form as its not "school related".

I hope someone can help you !

Message edited 11/13/2011 8:11:13 PM.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Baby steps.

Find the best reinforcers possible. You eat 1 bite, you get X. X is the best stuff around. He can never have X unless it's for eating stuff.


At DS' school, they started with food crafts. Make catepillars with celery sticks, cream and raisins, etc..

I would start with food as "fun"... crafts!

Then introduce 1 small piece of food in exchange for the reinforcer. Then drop it. Next meal do it again!

It will take time and patience.

With DS, he wanted juice, he had to eat the small piece of chicken, then he got juice instantly with huge praise.

School worked with us.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

I have had so much difficulty feeding my almost 2 1/2 year old also. None of it is sensory though, just 100% low appetite and behavioral. He had feeding therapy and nutrition through EI, but since he can chew and swallow fine and will eat when he chooses to, they cut services. We still see a nutritionist through the GI doctors office.

He is on the 1.5 (higher calorie) pediasure and will only drink this and refuse to eat anything some days. But we are in a bind because without the pediasure he does not eat enough calories to gain weight.

Who did your eval through EI? The agency I used, South Shore Speech and Swallowing, really advocated for us and pushed the county to give the therapy. Have you had him evaluated since he stopped eating all together? I can not see how the county would not approve it when i know they have approved it in less severe circumstances.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Does he have enlarged tonsils? I know a few kids that had enlarged tonsils that extended down to their throats, and could not swallow food. Once the tonsils were out, issue was resolved. If you haven't been to an ENT, I would see one soon.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

Posted by Lola

I have had so much difficulty feeding my almost 2 1/2 year old also. None of it is sensory though, just 100% low appetite and behavioral. He had feeding therapy and nutrition through EI, but since he can chew and swallow fine and will eat when he chooses to, they cut services. We still see a nutritionist through the GI doctors office.

He is on the 1.5 (higher calorie) pediasure and will only drink this and refuse to eat anything some days. But we are in a bind because without the pediasure he does not eat enough calories to gain weight.

Who did your eval through EI? The agency I used, South Shore Speech and Swallowing, really advocated for us and pushed the county to give the therapy. Have you had him evaluated since he stopped eating all together? I can not see how the county would not approve it when i know they have approved it in less severe circumstances.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)

There is a also a feeding Mommy and Me class held at UCP in Commack- its through EI. I think its called FEAST. They do a lot of food play and observing other children eating new or different foods in a playful setting. I have been told its a very effective program- especially if the feeding delays are more behavioral based. My DS is not a candidate because his delays are motor related and he doesn't self feed yet. You should look into it.

Re: Oral Sensory Issues/Feeding (my 2.5 year old)