Has Anyone been successful with SI therapy for Oral Defensiveness?

by Linda
(Orange, CA, USA)

Please help...my 4 1/2 year old son has SPD with severe oral defensiveness and tactile issues. To make a long story short, he has been getting OT/Feeding therapy to try to desensitize his mouth, but after 2 years of this therapy there have been no improvements, mostly regressions. Ever since purées were introduced into his diet, at about 6 months old, he has had a severe oral defensiveness and tactile dysfunction. If you tried to feed him any food with texture that would sit on his tongue and might need to be chewed, he would immediately gag and throw up. He also is a very picky eater, and would only eat 5 different flavors of stage 2 baby food.


So after 2 years of individual OT/Feeding therapy, all that was accomplished was he could touch some dry foods and stick & lick ketchup off his finger. This therapy clinic used the SOS method, which primarily uses tactile playing with food to get them used to touching, and exploring different textures. So, in October of 2011, I switched him to another Therapy Center that only deals with SPD and SI OT therapy.

So, now it has been another year and he will only eat 3 types of smooth pureed foods: (plain luke warm oatmeal, room temperature strawberry yogurt and chocolate pudding). He also refuses to touch and will barely look at food; therefore, he will not feed himself. The SI therapy is all OT gym work, to desensitize his nervous system, without any food therapy. All the food therapy experimentation is for me to do at home and I'm so burnt out. I don't have the mental strength anymore to keep trying to feed him textured foods. Throughout all this therapy, my son would rather die than eat food, he doesn't care about being hungry and would starve himself if I didn't force him to eat. And so now, I think he has built up a phobia of unknown/textured food and even if his mouth was desensitized, he would still gag just because of the anticipated anxiety. My son is very smart and cunning, and besides the food issues, he also has issues recognizing his bodily functions and he lacks most self help skills, he won't dress himself, and refuses to be potty trained. He is in a regular private educational preschool, 3 times a week for only half days, because he won't eat lunch there on his own. I'm worried about next year when he will start kindergarten full time?

Nothing has worked, what do I do? Do I need to check him into an in-patient hospitalized feeding program? Do I need him to see a child psychologist to help him resolve the phobia? I don't know what else to try? I know there must be someone else out there that knows what I am going through and I really would like to hear from you to find out what therapies worked and what techniques I need to do to help treat him. We live in Orange County, CA, which has a lot of resources and I drive long distances every week to all his therapy sessions to try to help my son. Please help.

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Oct 07, 2015
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DIRFloortime for sensory & feeding
by: Anonymous

You may find more progress using an approach that incorporates the DIR Model and Floortime philosophy. One developmental feeding program is offered by Professional Child Development Associates out of Pasadena, CA. Their website is www.pdca.org.

Aug 07, 2015
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sensory in mouth
by: vanessa562

Hi I have a 3 year old that doesn't chew so I have to puree her foods like apple banana n cherries with milk or chicken with green beans squash carrots broccoli potatoes she likes it or same veggies with ground turkey or beef likes strawberry yogurt or sweet potatoes with broccoli I'll feed her 3 scoops then little bit of water after n keep doing that does anyone know any good recipes for puree my 3 yr old gets o/t but hates it she's going to start prek I'm so nervous I just wish she could chew

Jul 10, 2013
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SPD with Oral Adversion
by: Anonymous

Our son is 5 and suffers from similar issues He will only eat shoe string style fries, cookies and 2 types of baby food. In March of 2012 we were told by a Behavioral Psychologist that he would eat when he was ready because he had no motivating factors to convince him to eat. We could go home and wait for him to have a desire to eat or we could spend the summer at Kennedy Krieger Institute in a Pediatric Feeding Disorder Day Program. The latter option is expensive and would require mommy to live in Baltimore with him for the summer.

His sensory issues seem to be increasing when it comes to food. Smells are becoming a problem and he leaves the room if he smells any food cooking. It amazes us that he will stand there and talk to us while we are in the “bathroom”, but he can’t stand the smell of freshly popped popcorn.

Our son has been referred to a pediatrician that specializes in Developmental & Behavioral Pediatrics. There has been talk of medicating him with prozac to reduce his stress level when it comes to food. After years of OT/ST and numerous doctors, we are hopeful.

Jul 09, 2013
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Is Food Therapy actually working?
by: Carol H

Sorry to hear about your struggles. I don't have an answer for you but I am dealing with a similar issue.

My 2.5 yr old toddler has been in food therapy for a year now. Although some initial techniques have been useful and beneficial to my understanding on how to deal with mealtime, I am very frustrated with the LACK of progress from food therapy. He has a very limited palate (maybe 10 items, mostly starches). He has not added any new foods to his repertoire after 1 year of food therapy.

I sometimes want to throw my hands up in the air and give up! I know therapy is important and useful to many children so I will not say negative things about therapy. But I am so personally fed up without any noticeable progress.

Jun 21, 2013
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Brushing techniques
by: Anonymous

Have you tried the brushing techniques?
My daughter (6) has responded well to this type of therapy. It is alot of work and she often refuses to get brushed but she seems more relaxed and can often concentrate for longer periods of time after each brushing session, which has helped with her eating habits.

I feel your frustration. Good Luck to us all and most importantly to these children who suffer from these horrible symptoms!

Apr 12, 2013
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Mommy Instinct
by: J

My son has similar issues and we've been back and forth to so many doctors and therapists it's ridiculous. Some say it's a symptom of autism - some say it's not.
We think there's a lot more going on there than just one thing. He's very intelligent. He once had speech issues but with therapy he's starting to catch up with his peers.
As for his feeding, there has been little progress. I know EXACTLY how you feel. Our stories sound so similar.
The best advice I can give you is it does sound like a mild case of autism - (there are sensory processing issues with that) and that diagnosis can help get you the services he'll need. So take him to a neurologist an voice your concerns.
I know it's draining and stressful, but I can also tell you love and would do anything for your son.
Say strong. You're not alone. :)

Nov 06, 2012
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RE: Oral defensiveness
by: Anonymous

Hello! Same problem with my two year old son. Good luck! Try ABA.

Nov 01, 2012
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MOM TO
by: Philomena casey O'Hagan

Hi there,
I am mom to a 19 year old girl who has williams syndrome and we had all that tocher when she was a child. I nearly lost my mind with worry that if she did not eat she was not going to live.

I did all your are doing before I got peace of mind I eventually gave in and begged the doctors to give Ashleigh a gastormey tube. All our lifes change for the better no more pleading and worrying, Our Daughters life changed for the better no more pleading with her to eat, She gained weight she began to improve in all the developmental ways that she lacked and I am glad to tell you about two years ago she came into herself and wanted to try to eat it was a slow road but it was her choice and she now eats most foods that all the family eats.So give your self a break and go for the easier way for all of ye So what if he dose not eat. He will in his own time
kind regards PHILOMENA

Nov 01, 2012
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OMG
by: Anonymous

I am so sorry for you. I know how hard it can be. and how draining, mentally. Have you heard of ABA Therapy. It is very expensive and insurance won't pay for it, but I am sure it can help you. They come to your home for hours a week and work with your child until success. I haven't had a paycheck in 9 months because I have been paying for this therapy. But I would live in a box before I would give it up because its the only thing that has helped my grandaughter. Please look into it. Bubby

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