How to cope with Sensory Integration Disorder Diagnosis?

GISELLE - posted on 06/29/2012 ( 4 moms have responded )

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Hello everyone. My 2.5 year old daughter was just diagnosed with Sensory Integration Disorder and Behavioral Eating Disorder. She has always been a VERY picky eater, and even as an infant never showed any interest in foods. Even feeding her pureed and baby foods was a battle. She went through the whole chewing her food for what seemed hours on end and then spitting it out phase from about 13 to 15 months old, then she had a few decent months where she would eat oatmeal or rice crisps cereal for breakfast, veggie soups, rice, chicken or pork with potatoes and rice, and occasionally ground beef with rice. But it was always a luck thing when she would actually sit and eat a few spoonfuls. She's always been very picky about getting dirty as well - if she self feeds and makes a mess, she REFUSES to continue eating, even if it was her first spoonful. We'd tried EVERYTHING - sitting with her at the table, sitting her in the high chair and making her eat (never worked), leaving food out for her to nibble on, but have never had a really good week where she would eat a decent amount. I always brought it up at wellness check ups and her doc always said "she'll eat when she's hungry...her stomach is the size of her fist"..but it wasn't until she completely stopped eating even her preferred foods, and lost 2 lbs in one week that her doc was concerned. Needless to say she told us to give her 2 pediasure/day and when she FINALLY gained the weight back almost 2 months later, decided we should be seen by a pediatric gastrenterologist. He ordered a swallowing test to rule out any difficulty swallowing, etc. And after refusing to eat anything and only drink her milk during the test, the speech therapist that was present told me she was fine in terms of swallowing food. I got the call this morning from the 's office and the official diagnosis was sensory integration disorder and behavioral eating disorder. So now we're on the waiting list for the Feeding Clinic in our city for some occupational therapy and treatment.

Sorry for the seemingly endless post, but now here's my question...how are other mothers coping with this diagnosis? We always thought she just inherited her bad temper from her father and I (lol), but from what I've read about this disorder...a lot of her behavior is linked to it somehow. I don't know. =/

Any advice or suggestions would be greatly appreciated. And thank you in advance for taking your time to read my super long post...=]

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User - posted on 08/02/2012

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You don't have to cope with the diagnosis. My son is now six and has SPD, your story sounds similar. She doesn't want to eat because it is an unpleasant or overwhelming experience for her. First you have to figure out how it feels and what about it is unpleasant. This requires a lot of observation and trial and error. It could be the texture, smell, color any number of things. It could also be the environment. I will use my son as an example... he eats better when he is sitting on something that supports his back and squeezes his bottom. soft chairs make it difficult for him to sit still. He likes them firm and hard. also with tiny bites, he will not use his teeth to chew, he will only eat food that he can mash with his tongue on the roof of his mouth. He also does better with strong flavors that are smooth and soft but not pureed. It is frustrating I know. He would eat hot dogs and grapes only if I peeled them first. Scrambled eggs have to be soft scrambled. He will eat cheese only shredded and chicken nuggets only if the breading is peeled off or it is microwaved because of the texture. If you can find one thing she will eat and slowly, and I mean SLOWLY add something to it you can get her to accept other textures.

I know it sounds cruel but using hunger as a weapon is what we had to do. Choose something she will eat sometimes and offer it. I took his pediasure away, against doctor recomendations and gave him manderine oranges a lot because he would eat them. Then we moved up to peaches and on to the veggies very slowly. I am not telling you to do this because I don't know your child. But it did work for mine. He is still a very picky eater but he eats enough that he is gaining weight and is off supplaments.

My family still gives me a hard time because I prepare his food differently than everyone elses and they believe he is just spoiled. Imagine though that when you bit into your favorite snack and it hurt like biting into a frozen popcicle or chewing on tin foil. You don't know how it feels to her.

Try a spin brush to stimulate her mouth. These kinds of things can help to desensitize her mouth and improve eating. Anything you can get her to do with her mouth is good therapy for the problem. I hope this helps a bit. Hang in there, and be relieved that this behavior is internal and nothing you have done to "spoil her."

Amanda - posted on 08/01/2012

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My son Mason sounds almost exactly the same! He won't eat anything that has any texture to it really. Super picky! He eats yogurt, pureed baby foods, soup (as long as I strain out any chunkiness), and anything crunchy. And that's IT! He has been drinking 2 pediasures a day since he was about 17 months old. He just turned 2 this month. We've been working with a feeding therapist since last February. Like you said, my son tends to eat really well with trying new foods sometimes and then other times completely refuses them. All luck! He's also in physical and occupational therapy. We are hoping once he gets stronger oral muscles that he will eat more stuff. We have an appointment with GI next month to see what to do also. I know how frustrating this is and you just want them to EAT. Uggghghhghg sorry for my long post but we've had feeding issues since he first started eating. Good luck to you!

Cherish - posted on 07/10/2012

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Hi,
Are you going thru Early intervention?
http://www.infantva.org/
I am not sure where you are at,but you can call some people and maybe find a local parent support group,or ask about services
http://www.specialneedskidsinfo.com/Arli...

My son is 10 now,and when he was little early intervention was until he was 3,but I know they changed it after 2,so now it is part C for kids over 2(but I am not up with all that anymore b/c he is older)

My son has been in speech,OT,behavior..etc therapy since he was 2.
My favorite book for feeding problems was "just take a bite",for sensory it was "the out of sync child" and for behaviors "the explosive child"(however the explosive child is for kids that are "high functioning" and verbal),but it does provide insight even if they are not verbal or "HF"

Julie - posted on 07/05/2012

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Hi Giselle, you must be really overwhelmed. I haven't dealt with a feeding disorder, but when my daughter was your little one's age her life was overrun with tactile issues. When we started seeing the OT and implemented a therapy program, including a brushing protocol every few hours during the day, her overreaction to all kinds of sensory stimuli went way down, and her sensory seeking behaviors came under control a little bit. You are in a tough spot because your little one can't tolerate food, but believe me, the therapy team should have some great ideas to make things better. If there is one thing I learned, if plan A doesn't work, there is always a plan B, or C.....

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