Oral sensory issues? Hyposensitivity?

[mommymilkies]

I wasn't quite sure where to put this. My 5 year old has been having food issues for about 2 years. She was EBF for a long time and then loved about every food we put in front of her-everything from French Onion Soup to Salmon. About age 3-3.5, though, she started becoming more and more picky. She developed a bit of an addiction to breads and sugary foods. She went gf due to severe GI issues in Oct 2011 and has been gf since. It has rather miraculously helped her. She is gluten intolerant and has peanut and cashew allergies.

 

But...she is small and underweight. Not enough that they will retest her for thyroid problems (my 8 yo has profound Hashimoto's, so we watch carefully and know the symptoms). But enough that they tell us to "encourage her to eat more". That's so hilarious. Because her aversion to almost all food has become increasingly worse.

 

My ds had SPD and went to OT for a couple of years before "graduating", but we are rural and finding someone to properly evaluate and help has been difficult for friends and I've had trouble getting our doctor to refer us to anywhere (long story short they think the school district should, the school district tells us there's nothing they can do). She does have speech problems, notably a lisp and possibly still a tongue tie from infancy, but they just gave me a sheet of s words and told me to deal with it but her kind of lisp "will likely get worse when she is older if not properly dealt with".

 

So dh is fed up with eating with us because of her food issues. She pretty much cries and refuses to eat anything at all besides her short list. I'm surprised one can live so long on air. I can not give her just what she wants, because what she wants she is allergic to or is very unhealthy (like sugar). She is also inconsistent about what she likes and will eat. Sometimes she says she likes something and I go out of my way but she refuses to even look at it 99% of the time. Dinner time is absolutely miserable, to say the least. And I'm going to have to cut dairy back out (one of the only things she will eat) because she has bedwetting problems when consuming dairy.

 

What she will eat:

*Crispy or slightly burnt foods such as chips, fries, gf chicken nuggets (sometimes), popcorn, toast, nachos, rarely burnt steak, Cornmeal fried fish (sometimes), ants on a log (hallelujah a vegetable-the only one!)

*smoothies (with anything in them)

*Sugary treats

*Pecan butter & jelly sandwiches once in awhile

*muffins (any type)

*Chick Fil A Honey Roasted BBQ sauce (no joke, like by the pint if I let her)

*jambalaya

Fruit, and rarely raw and only raw carrots

 

 

So I was going through a questionaire I found only after failing to find a good section in my Out of Sync Child book. And she's all over the place! I highlighted hers in red. Notes in blue. She will sit with a bite of food in her mouth for an hour and refuse to swallow because she doesn't like it. She says she doesn't like the texture and it makes her gag. But she likes crunchy things and smoothies. She won't eat mashed potatoes anymore because she found a chunk once. She chews on her hair and fingers. She's gnawed through my 2 yo's balaclava, etc. So Hyposensitivity seems more likely. I just don't know what to do about this! Any tips or tricks for this until I can get her properly evaluated? I need this kid to eat and I want to enjoy meals again!!!

 

 

1. Hypersensitivity To Oral Input (Oral Defensiveness):

 

 

__ picky eater, often with extreme food preferences; i.e., limited repertoire of foods, picky about brands, resistive to trying new foods or restaurants, and may not eat at other people's houses)

__ may only eat "soft" or pureed foods past 24 months of age

__ may gag with textured foods

__ has difficulty with sucking, chewing, and swallowing; may choke or have a fear of choking

__ resists/refuses/extremely fearful of going to the dentist or having dental work done (She LOVES the dentist!)

__ may only eat hot or cold foods

__ refuses to lick envelopes, stamps, or stickers because of their taste

__ dislikes or complains about toothpaste and mouthwash

__ avoids seasoned, spicy, sweet, sour or salty foods; prefers bland foods

 

2. Hyposensitivity To Oral Input (Under-Registers)

 

 

__ may lick, taste, or chew on inedible objects

__ prefers foods with intense flavor; i.e., excessively spicy, sweet, sour, or salty (I can kind of see this. She prefers salty crunchy food or sugary anything and likes Jambalaya)

__ excessive drooling past the teething stage

__ frequently chews on hair, shirt, or fingers

__ constantly putting objects in mouth past the toddler years

__ acts as if all foods taste the same

__ can never get enough condiments or seasonings on his/her food

__ loves vibrating toothbrushes and even trips to the dentist

 

Source: http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

[specialmama]

(((hugs))) Been there. Am there. Living it.

 

It is not true that one can only be hyper or hypo sensitive. My son has been examined thoroughly every year by an OT and always tips the scales on severely hyper and severely hypo sensitive in every sense. This makes life... interesting! You just never know when it'll switch. He'll be seeking-seeking-seeking, then in a milli-second he'll be avoiding-avoiding-avoiding.

 

As for diet, I have a ton of ideas, just not a lot of time right now. I will write what I can...

 

My son regressed around 18mths of age. He lost a lot of the foods he ate, and settled on bland and beige foods. This is his entire repertoire:

plain waffles

plain pancakes

plain toast

bananas sliced with applesauce

vanilla yogurt

pb&j sandwhiches

chicken nuggets

french fries

crackers

 

That's it. That's all she wrote. We have breakfast items and 2 meal items. Sandwiches for lunch and nuggets and fries for dinner. Every day. For 11 years. Not a single veggie.

 

Anyhow, I have had him to a specialist. Learned a lot about pairing items. Take a food that is similar to what she may eat, that you want her to eat, that your family eats all the time. Serve it every other day. Put it on her plate. The goal is to tolerate it on the plate. If she does good, then ask her to kiss it. If she does, then ask her to lick it. If she does, then ask her to take one bite. It may take months, but persist without getting angry and celebrate every little success. Always pair a favourite item with a less favoured one, to increase the chances that she'll tolerate the less favoured. Watch carefully for gag reflexes and if they exist, introduce non-food play items of similar consistency to decrease the gag reflex.

 

Engage in frequent and fun food play. Paint with peanut butter, pudding, ketchup, yogurt. Laminate her favourite colouring pages and have fun. The goal is tolerating and associating fun with food. Use any hard food for paintbrushes: celery, carrots, hot dogs, etc.

 

Read lots of fun books about food: Now I eat my ABC's is a favourite around here. We try to recreate the art and that's always a hit.

 

Design food in fun ways.

 

Be sneaky. If you noticed, my son does not eat a single veggie. With kids like these, with profound sensory issues, they WILL starve before they eat what they don't like. There was no winning on the veggie front. So we bought a high quality green powder (all organic real veggies, not 20 kinds of grass) and began to put a pinch in each serving of his juice. We very gradually increased the pinch. He didn't notice because it was so gradual. One year later we were up to 1/4 tsp. It's been 4 or 5 years now and we're up to 1 tsp in every beverage. It may not be a lot but it's way better than no veggies!

 

Use only real juice, not the frozen from concentrate crap. Real juice, not from concentrate. Dilute with 1/2 water. The intention is good calories from fresh fruit, but you can't allow a child to get all their caloric intake from fluids.

 

Analyze what she eats, and modify the recipe or introduce similar things to that item. For example, she likes the Honey Roasted BBQ sauce, so use that wherever you can with different foods. Or grab a similar sauce and add a bit of it to her standard. Slowly over time you can introduce several different flavours without too much hassle. Add a different veggie in your jambalaya. Keep the menu up! Don't skip a favourite for too long, or she'll lose taste for it! My son used to eat roast beef with noodles the way my MIL made, but when we moved across the country he couldn't eat it. One year later when we visited her, he just about threw up at the sight of it... so keep all those great menu options on the table.

 

As for your dh, I think you both need to have a heart to heart and come to a clear understanding. No food item, menu or lack thereof is worth disharmony. Am I tired of cooking the same darn meal for 10 years straight? You bet! But I keep plugging away because he needs to eat. I keep up the food play and sometimes he'll bite a new food. Although I didn't put it on the list, he does regularly eat pizza now, and cookies (I can make them healthy) and these are both new wins due to food play and consistently pairing foods. Life is too short to not enjoy sitting down for a meal with our family, regardless of how some choose to self-limit. When we're dealing with sensory issues, we need to have compassion, understanding, and creativity. It usually means that we need to yield, because they often will starve rather than eat new foods. Parenting involves, as you know, many sacrifices. I think your dh needs a hug, a safe place to commiserate, but then to take a deep breath and accept what it is and make the best of it.

 

Will try to write more later...

[geodob]

You wrote that 'she will sit with a bite of food in her mouth for an hour and refuse to swallow it because she doesn't like it.'

But this rather raises the question of whether 'swallowing' is the issue?

You also wrote that she has a 'kind of lisp', which can cause swallowing difficulties?

A Lateral lisp which reflects a difficulty with lateral control of the back of the tongue, can cause a problem?

Where this lateral movement of the tongue, is also used to channel food into the centre of the tongue, and shape chewed food into a 'bollus', so that it is easier to swallow.

But when their is difficulty with lateral control of tongue, then food isn't channeled into the right place for swallowing.

 

Though another issue related to Lisps, is a retained 'Tongue Thrust'?

Where the tip of the tongue is pushed forward when swallowing. This is a normal reflex in infants, and is related to breast feeding,

Typically this reflex completely disappears between the age of 4 to 6.

Where the importance of its disappearance, is that it then allows the tip of the tongue to play its critical role in propelling food to the back of the tongue, for swallowing.

But when this 'tongue thrust' is still occurring, then it of course makes it difficult to position the food for swallowing.

Though you also mentioned a 'possible tongue tie', where tongue tie limits the movement of the tip of tongue.

 

So that I wonder if the underlying issue, is a difficulty with swallowing?

[mommymilkies]

Well, she can swallow cookies, cake, and chips just fine. It's the food she doesn't want to eat that she takes an hour to swallow. I will have it checked out, but I'm 99% certain there is no physical swallowing problem. Just a psychological one. ;)

 

Thank you, Karyn. I will start a food journal today with what she *will* eat and try to track some sort of definitive list of preferences.

[Jennifer-72]

A book I found very helpful is Just Take a Bite. That book along with some OT using the SOS feeding approach worked very well for my son. He went from eating around 15 different foods to trying most things I put in front of him. He still has some texture issues, but he is no longer a limited eater.

[specialmama]

A book I found very helpful is Just Take a Bite. That book along with some OT using the SOS feeding approach worked very well for my son. He went from eating around 15 different foods to trying most things I put in front of him. He still has some texture issues, but he is no longer a limited eater.

 

 

YES!!! I borrowed that book from the feeding clinic and appreciated it so much! Thank you for reminding me of that, even though I'm not the OP :)

[Walking-Iris]

I feel your pain. I can put a check by every point in the first category for my oldest except 'only eats soft food" and ""hot and cold food". My ds refuses anything soft and hates all cooked anything.

 

Nutrition wise I just work those smoothies. For swallowing we give my ds the same meal every time until he desensitizes to it. IMHO it's anxiety more than sensory that causes these issues. Sensory may be just one part of the problem, anxiety aggravates it. So...discipline things like forcing them to eat when they don't want to, or making them stay at the table, or any kind of frustration they can pick up on just makes it worse. The more they feel worried or anxious about meals or food the more they refuse to eat. I think that's true of nearly all children. Food issues can be created.

 

With the allergies and dietary restrictions and changes, she just may be picking up on that food anxiety and internalizing it. It's really similar to an eating disorder. I try to keep necessary nutrients getting into my ds because he will drink anything from the smoothie machine. As far as meals I try to make things that are not overly mixed up, messy, or too spicy. Sometimes that means he gets separate meals. But I don't coddle that behavior. I do make him sit with a plate of food whether he eats it or not without complaint. I do require him to try new foods. Sometimes I notice that if I give him the same thing repeatedly, he eventually opens up to it. Grapes and bananas and apples are one recent example (because I desperately wanted him eating, rather than just drinking, fruit). I don't even worry about any other meal or food. I just give him his favorites, but several times daily the apple (just the apple) was my mission. I don't let him step away from the apple when he wants to, he has to stay beyond his flight reaction. My ds is dx'ed OCD so it's really important to not let him always run away from the fear. If they can sit with that panic feeling until it subsides then they learn that they can control their thoughts. My ds won't even touch food, so after he's okay with the wetness and texture of holding, he takes a bite from a slice of apple. And when the gagging and choking start I just calmly tell him to "relax you won't choke, your body is made to eat, use your teeth and swallow". As long as it takes. Anyway to make a long story short, he can wolf down these three fruits now and wants to eat them. It took months to get there. I also do not make an issue of food in public. So at friends or family or co-op etc I just let him eat what he wants or not eat at all. The anxiety of being in a social setting (he's dx'ed PDD-NOS and OCD) and adding the food conflict on top of it is too much. I just work on our eating at home and put on my bullet proof armor when it comes to any looks or judgements or worries about what people think.

 

Some people just won't really eat though. I had a co-worker in college who was likely Aspergers who only ate tofu (straight from the carton), blueberry yogurt, plain spaghetti noodles or plain rice, raw carrots and broccoli and Swedish Fish. No joke. Nothing else. And he was happy and really fit (he worked out and hiked and biked etc) and it didn't seem to bother him one bit. <shrug> I'm sure his mom was a wreck though ;)

 

My 5 year old has been going through a recent phase where he is chewing on things and putting stuff in his mouth. (shirt sleeves, toys, pencils) I never saw him do that (ever, past infant teething) until his front tooth came out, so...I've thought it was related somehow. He's fixated on that empty spot I think. But he doesn't have any food issues. If a child starts to put certain things in their mouth--coins, dirt, even soap etc obsessively, then I would start to worry about malnutrition.

 

Keeping a food journal is important. It helps to see that their basic nutrition is covered and there are no gaps. Keeping a consistent diet is important too.

[dsmith]

It may be worth checking out a speech language pathologist if you have any in your area. They can be very expensive if you don't have insurance. DS had some extreme sensory issues related to food and eating that kind of spiraled out of control and I couldn't find an OT that could help him. Out of desperation I found an SLP that dealt with feeding/swallowing issues, and although he didn't have any physical swallowing issues she was able to work with him to get him eating again. ( He has stopped eating anything but vanilla pudding and was about to be hospitalized if he lost any more weight.) She was very knowledgeable about sensory issues and helped him to expand the types of food he would eat. She had a very systematic method of introducing foods, and many tricks to getting ds to try things. It cost us a fortune, but it was worth every penny.

[SBMama]

I just saw this while doing a search, but I wanted to recommend the book Food Chaining. (I have not read Just Take a Bite, but I will be ordering when I'm done posting here!) My DD6 is a reluctant eater. We had her in feeding therapy briefly last fall, but it was costing us quite a bit and I didn't really mesh personality wise with the therapist. I am hoping we can start her in therapy with someone else soon. Anyway, we did find out that DD has immature chewing patterns. Apparently, when she gets tired, she chews like a 2 year old. This is why she won't eat meats and raw carrots, for example. DD also has a flat top lip, which makes chewing more difficult for her. I would definitely recommend having your DD evaluated by a feeding therapist to get some insight into the cause of her selective eating.

[thebacabunch]

I would start by making the eating thing a no fuss thing. Serve what you serve for everyone else and have something that she will eat for her. We have eaten many meals with dd just having cocoa puffs but is around food she doesn't like. We then moved to putting something on her plate she doesn't like but not making her eat it. We reward any attempts to try something new even if it is spit out. She also has 1 night a week that we eat what she wants.

 

My dh would definately get a talking to if he refused to eat with the family because he doesn't like what a child with special needs was eating or how. That is just me.

 

dinner time is family time. Maybe food desensitisation should happen at another time and dd should be given what she will eat for now.

[mommymilkies]

I will not serve her just whatever she wants. That's what we had been doing and she's dropped down to barely on the growth chart and is sickly. Not to mention that her toddler sister watches her and now refuses to eat unless the 5 yo does, and only then what the 5 yo eats. Not to mention the other kids would be royally pissed if they didn't get cereal for dinner instead of whatever we make.

 

I wouldn't give my dh a talking to because he's fed up, either. If you sat with a child screaming through meals and creating a scene for every single food item you ever give her, you would see it doesn't just make his life miserable, but all of ours.

 

She started ST, and they might move her to OT after awhile for the food (she also has a lisp). They're working on the food issue with her, but with her food allergies, it's going to be difficult. It's not going well.

[Tiramisu]

Just sending hugs and an affirmation of what this can do to a family. The stress on the other kids and parents is very real and unrelenting. Nothing is wrong with your dh or your family, but you may want to look into family counselling. It's important that your 5 yo doesn't think that the stress in the family is her fault, but you and your dh and the other kids may need help in finding ways to cope and preserving good dynamics despite the stress of this.

 

There's been a thread recently on PTSD developing from tough family situations. Maybe it was on the chat board.

 

I don't have a good answer but if your dh feels like it's getting too much, it might really be better if he can take a break when he needs to and eat somewhere quiet and peaceful. I think that would be preferable to his stress showing in his attitude and having that picked up on by your 5 yo and the other kids. That would be much more dangerous to your dd and your family relationships. I'm saying this as someone who has seen how other sensory issues can impact family dynamics over the long haul.

[mommymilkies]

I agree, but we can't really afford it. This week I am eating dinner with her in another room, though to "work on her manners". She even tried a bite of her sandwich and half a piece of cauliflower. That's a big step! I'll start transitioning her back as a group once she can keep the comments to herself. Thanks!