extended tongue thrust / gag reflex - what therapy is available?

[Catubodua]

Not sure if this should be here or in Life with a Babe, but  ....   Our son, whom is otherwise developing at average rates and is 11 months old, is having a big issue with food.  He will not eat any amount of solid food, and if anything gets in his mouth he will projectile vomit.  It doesn't matter if I hide it in other food (as an example, I placed a tiny, tiny piece of egg in his fruit one day and he vomited).  And, it's even food he seems interested in eating - like a pizza crust.  He'll lick it, and seems to like it, but the moment a crumb breaks off and gets in his mouth - vomit.

I've brought this up with his Ped a few times and I keep getting told to not worry until he's over a year old.  Well, I don't see this changing much in just a few weeks.  So, I'm wondering, what types of therapy are available for this?

Our Ped advised us to put little bits of whatever we are eating on his highchair tray and let him explore & be messy and we've done that.  We've also offered him various items to taste (like teething biscuits or puffs).  he's interested in the food, wants to play with it, and will sometimes even bring it toward his mouth to try, but it always ends up the same as above.

Any help / input is appreciated.

[gsmom]

Sounds like you are doing some cool stuff.  I would keep just offering him things and letting him try them.  Have you tried carrot sticks or celery (obviously supervised) which don't break apart as easily.  It's cool that he is trying things himself.   I would encourage you to push a little bit with the pediatrician.  Some grimacing with new textures and even a little bit of gagging at first is normal, but what your kiddo is doing sounds more extreme than that.  

I would also recommend finding a feeding clinic or a speech therapist or occupational therapist who specializes in feeding near you.   I often see kiddos who sound similar to your kiddo.  Sometimes it helps to have someone who can give you ideas on a more regular basis.  It sounds like your kiddo has some significant sensitivity issues, either hypersensitivity (too sensitive) or hyposensitivity (undersensitive), which can look very similar.  The vomiting, I would hypothesize, comes from him getting a piece of food in a place he doesn't know what to do with it, so his only mechanism to getting rid of things is to vomit.

Some suggestions:  Try changing the texture by just a little bit (taking a graham cracker and rubbing it together works or a bit of rice cereal thickens), remembering the little bit part.  Adding chunks may be noxious and icky to your little one, I would try to just change the texture a little bit.  Even using a food mill to puree foods can make them a little bit more chunky than just smooth baby foods.  Add the chunkier stuff (just a little bit) to the smoother texture.  Change the temperature a little bit.  Model just licking the food and playing with it.  Food interaction and playing with food is a huge step in the right direction.  I have worked with kids that the first step is even allowing certain textures or foods in the room that we are in.  

I will post more if I think of more ideas.  

[khaoskat]

I have a child who has swallow difficulties.  You might want to look into something like that.  Maybe he is starting to swallow it, and it gets stuck and he pukes because of gagging on it.

I wish I was at a point we could get through his swallow issues, but ours I think are related to his GERD.  When he gets solids, we put the spoon in his mouth and he just sucks it down also he sucks on his fingers a lot after we put the food in his mouth.  At almost 8 months of age, he doesn't have the tongue movement developed yet.  I am going to see what his Ped says when I come in for his belated 6 month check up.  

[Mom2M]

We had swallowing problems with DD and were advised by our ped to call Early Intervention to see what they thought. He told us that if we waited till a year it might be more difficult to get over it and she was10 months.

They evaluated her and suggested OT and she did great.  After 5-6 times, which were spread out to once a week, she started eating.

I would call them, it's free and they really helped us. 

I know how frustrating and worrying it is, I hope things get better soon!

[Catubodua]

thank you all for the input.  def. alot to think about & do!

[babygirlie]

Mine did the same thing. If a pea skin accidentally *cough* got into her tummy she puked everything up making sure it was NOT in there. I fed her purees forever. She wouldn't even eat well mashed bananas. So I started with baby puree bananas with rice cereal and then work up to real bananas mashed super well with her cereal. It took a long time to transition. One day at 16 months she just clicked. Just boom she was suddenly ok with things. Though it took another 6 weeks to get her to eat a noodle then just one day... it was ok.   She still has texture issues. She will just spit her food out if she's not in the mood that second to eat or disaproves of a chewy piece of hamburger. She's 20m now and will eat many things and is now showing signs that she thinks pureed stew is no longer her thing and now only eats speghetti (which I'm trying to figure out how to make it healthier). She still doesn't eat a lot but she can eat a chunk of banana on her own now. Seems like it took forever but now it seems so long ago.

But I always had a towel nearby when I'd sneak that half of a pea skin in and got good at catching the vomit :(  Gross but oh well. She has an easy gag reflex too. She will throw up if she cries or heck gags when she walks.. but I get water randomly stuck in my throat too so probably got it from me.

oh and we did do EI but by the time all the testing and paperwork went through we didn't need help with that part anymore.

[hannahgrace]

From my experience, peds just are not trained with eating/feeding issues. I would try to get the doctor to refer to an outpatient feeding clinic. Then you can call and schedule an appointment rather than going through EI which takes a long time to get started up. If you go to an outpatient clinic, ask if they recommend EI and then start the process from there. The outpatient clinic may be able to show you some good techniques that will allow you to work on things while waiting for the balls of EI to get rolling.

[Catubodua]

Just a small update for those who are interested -

My son was evaluated by the Birth to 3 folks and they see three delays – fine motor control, expressive language and his feeding issues.  I’m waiting on another call from them to get our goals and action plan set up and to have them start working with him.

We’re also scheduled for a feeding evaluation tomorrow at a local children’s hospital feeding program.    So, hopefully things will get rolling soon.  We’re still in the same place we were – no “real” food.

[Mom2M]

I'm so glad you updated. It's great that you got the eval. our Early Intervention was really good and within 2 weeks of the referral we had our first OT. I hope it goes as well for him as it did for DD. She is still picky about putting things in her mouth but after she examines it carefully and tests it out she eats it, lol
Our only issue now is food allergies/sensitivities.
Good luck, I'll be thinking of you!
Deb

[Arete]

This is interesting stuff--my son Davey, 8 months, has trisomy 21, so tongue thrust is obviously something I think about a good bit.  We only just started with the solids a couple weeks ago, and he seems to have no trouble at all.  (We're not using a spoon, but rather our fingers.)  But it can be a gigantic problem with speech, so I've been investigating various things, including the Talk Tools.  Sippy cups encourage the thrust, and they have other kinds of cups, plus horns that make the blower position tongue correctly.  Has anyone else had any experience with these things?  P.S.  Our Birth to Three people think he is too young for speech therapy, but I am not so sure.

[Catubodua]

well, we are still waiting for therapy to start.  we've got our plan in place, and i submitted all our financial documents so that things can get going and we're just in waiting mode.

but!  this weekend he actually put a puff in his mouth voluntarily!    he didn't eat it, but i don't even care.  we also played a game where he put puffs in my mouth and i got to put a puff in his mouth. 

and!!!! he was chewing on a pizza crust and the tiniest little piece broke off and instead of vomiting he swallowed it.  i am beyond happy.  i guess sitting there with little kids who are all eating has made him think it's ok to try it.

[LoriAtYCT]

Originally Posted by Arete 

This is interesting stuff--my son Davey, 8 months, has trisomy 21, so tongue thrust is obviously something I think about a good bit.  We only just started with the solids a couple weeks ago, and he seems to have no trouble at all.  (We're not using a spoon, but rather our fingers.)  But it can be a gigantic problem with speech, so I've been investigating various things, including the Talk Tools.  Sippy cups encourage the thrust, and they have other kinds of cups, plus horns that make the blower position tongue correctly.  Has anyone else had any experience with these things?  P.S.  Our Birth to Three people think he is too young for speech therapy, but I am not so sure.

Hi There! I'm an SLP, so wanted to respond to the above.

Given that your child has trisomy 21, I'd say that I would expect speech to start at around a year, and I would expect someone to have worked with you to give you some good home facilitation techniques both speech and language-wise. If you haven't had an SLP consultation to give you a home program, I recommend asking for one, and then ask what time-frames actual 1-on-1 intervention should start. Hope that helps!