suddenly refusing foods.

[lmh2402]

DS, who has had ongoing food "issues" - gags on multiple textures, has issues with chewing (doesn't really chew unless repeatedly/constantly reminded during every meal)

he gags almost always on small grains, most vegetables (doesn't matter how they are cooked, or if they are raw), soft cheeses, and other things i can't think of

but one thing he always ate. always. was fruit. he was a huge fruit eater. i really counted that as a blessing.

but in the last few weeks, he has started refusing many different fruits. at this point, he will no longer eat oranges (he had been devouring clementines at a crazy rate). now he gags if i ask him to put a piece in his mouth.

he won't eat pear. which he used to love.

he won't avocado. won't eat any berries of any kind. he has started refusing banana - my gut tells me we're headed toward full-refusal of this soon.

at this point, we're down to applesauce, apples, pineapple and watermelon

i am beside myself. what do i do? i don't know if i should "force" the issue?

but i also know that if i let it lapse, hoping it's a phase, he will likely not eat these things anymore.

i say this b/c he used to eat avocado with gusto until he turned 18 months. and has refused it ever since.

he used to eat pieces of cheddar cheese. now he actually vomits if you put a piece in his mouth.

anyway, any suggestions?

thanks

[brittone2]

Is he still seeing an OT and or SLP? Ask them for a recommendation for someone who deals with feeding issues. Not all SLPs/OTs have extensive experience in dealing with feeding issues (which are probably intertwined with the sensory stuff for him), but IME in most areas there are a handful of SLPs and OTs who are particularly good with feeding issues.

You shouldn't be left to handle this on your own. Ask them for tips and additional evaluation. Was his feeding stuff ever evaluated as part of his original EI eval? Sometimes they do that separately.

I would not "force" anything without professional expertise from them on how to work through it all, taking into account the history of other sensory issues and so forth. They tend to use really incremental strategies to work through stuff, and will work with some of the sensory things since there's a good chance that could be the major contributor. A well meaning parent in that situation trying to force things could exacerbate the situation IME.

eta: is he stuffy? I know he was sick when you posted a few weeks ago. I wonder if that could exacerbate the gagging a bit temporarily. I know he was already gagging and has the other sensory stuff, but just thinking out loud.

[tiapam]

he used to eat pieces of cheddar cheese. now he actually vomits if you put a piece in his mouth.

anyway, any suggestions?

thanks

do you actually place food in his mouth? if so, i would stop doing that. he should be able to choose what to eat from the foods you provide him. my ped says you cannot force a child to eat, sleep or eliminate. don't take this the wrong way, but it feels like you are really hoping you can control these things. it might be easier on you if you just admit that you cannot. my kids don't eat as well as i would like and i def don't even try as hard as you do. i am done with guilt about that and hope they will be good eaters some time in the future. do you have a lot of rules about food? consider dropping most or all. also, are you giving him fruit out of season? i have never had good watermelon in january. maybe it really just does not taste good.

[lmh2402]

eta: is he stuffy? I know he was sick when you posted a few weeks ago. I wonder if that could exacerbate the gagging a bit temporarily. I know he was already gagging and has the other sensory stuff, but just thinking out loud.

yes, he's got an ongoing runny nose

we did work with a feeding person through EI, but that ended. and honestly, they never really helped us. we went to a feeding and swallowing center for a while and they helped with the chewing a bit...but it's still an issue. the kid literally doesn't chew unless constantly prompted throughout the whole meal.

re: question - do i place food in his mouth. yes. he stopped self feeding some time last fall. he really only eats if we feed him. and it's NEVER that we're forcing him to open his mouth. he just sits and opens. we put food in and say, "chew, chew, chew."

since he used to eat cheese, i several times put in a piece of cheese...and suddenly, he was throwing it up.

the only rules we really have are related to treats - which he self feeds with NO problems. ever. he cannot have treats unless he's eaten a decent meal. he also is only really offered the foods we're eating - i don't give him special meals. however, we have totally altered our own eating to work around his restrictions.

in all, feeding/eating has basically sucked for...forever. and now...even fruit.

re: watermelon off season, that's all he wants. i forgot to say he also no longer eats grapes or raisins.

he has asked if i can get him peaches, but those are totally out of season. so he's out of luck.

i don't know. i will ask the OT again. i've mentioned the food stuff before. but lately we've been working through so many other issues re: behavior, that they haven't really focused on my requests for help with feeding.

i've thought about calling the feeding/swallowing center again, but they weren't overly responsive re: the issues related to his sensory stuff.

[brittone2]

Can you ask the dev. ped for recommendations for therapists experienced w/ feeding issues most likely related to sensory issues? IME there are often a very small # of therapists who are well known for this being the bulk of their caseload, or a substantial portion of it. I would talk with the OT about whether she can work on some of the sensory stuff that may be impacting his feeding. You could also ask the feeding/swallowing people if they know of any outpatient pediatric SLPs or OTs who deal with sensory based (assuming that's what you are dealing with; obviously he can't be diagnosed without an eval) feeding issues?

Is the OT through EI or are you in private? I forget what happened there. If you aren't in EI, maybe a re-eval if you are noticing more issues now? I know the initial EI eval wasn't particularly helpful or informative (am I remembering correctly?) but I don't recall how long ago that was. Now that he's older and you are still dealing with some of these issues and other issues are exacerbated, it might be worth having a different EI team take a look?

eta: he'll be 3 in april, right? I'd be pushing for EI to take a look while some stuff may still be covered under EI, before he would transition out of the 0-3 program.

[daisymommy]

Absolutely go to a new feeding therapist. He is obviously turning some new corner with his eating issues, and I wouldn't let it go on too long without some outside help.

I'm right there with you, muddling along with my DS1 as well :hug:.

[lmh2402]

we're in private OT. EI was honestly, not all that helpful in any area. their OT only saw him for about two months before declaring that his sensory issues were "resolved" b/c he started playing with play doh without gagging.

in fairness, she was also restricted to mostly fine motor stuff since they were in our house

he now goes to a "sensory gym" that has all kinds of swings and rock walls and trampolines and big sensory bins, etc, etc

we supposedly had a feeding specialist SLP though EI. she came once a week and helped us get over some humps. he will actually now eat steam carrots.

but in all, not much progress. and now...it almost seems like regression

i will call the developmental pedi - i hadn't thought of that. thanks, brittone. why. WHY??!!! is everything. so. hard. why.

[brittone2]

we're in private OT. EI was honestly, not all that helpful in any area. their OT only saw him for about two months before declaring that his sensory issues were "resolved" b/c he started playing with play doh without gagging.

in fairness, she was also restricted to mostly fine motor stuff since they were in our house

he now goes to a "sensory gym" that has all kinds of swings and rock walls and trampolines and big sensory bins, etc, etc

we supposedly had a feeding specialist SLP though EI. she came once a week and helped us get over some humps. he will actually now eat steam carrots.

but in all, not much progress. and now...it almost seems like regression

i will call the developmental pedi - i hadn't thought of that. thanks, brittone. why. WHY??!!! is everything. so. hard. why.
Wasn't the initial EI eval a while ago? If it has been something like a year, I would call the intake coordinator or your (previous) case manager and tell them what is going on and ask for a re-eval. I would also ask for someone to do the eval who has sensory/feeding experience specifically. It stinks that you had a bad experience w/ the previous therapists, and there are definitely SLPs/OTs who will work on feeding but aren't *great* at feeding stuff.

if he was really young at the time of the eval, some of what you are seeing now may not have been enough to raise red flags, and it may not have been enough to have them too terribly concerned. Considering it is persisting and he's also having even more trouble w/ feeding, I think I'd ask them to take a look. I would ask the intake coordinator *specifically* to please send someone w/ feeding and sensory experience to the evaluation. When I was working that wasn't common, but was possible *if* there was enough mention of concerns in that domain. And there were really like 2-3 therapists who were really amazing at feeding issues.

I'm so sorry it is a challenge at every turn right now. I'd call EI and hope for a better team this time and better therapists. You may still want or need to pursue/continue private therapy, but since he's getting close to 3 I'd see what info you can get while services are still through EI. I'd also ask your OT and dev. ped for more assistance in the meantime as well.

[daisymommy]

we're in private OT. EI was honestly, not all that helpful in any area. their OT only saw him for about two months before declaring that his sensory issues were "resolved" b/c he started playing with play doh without gagging.



Now *that* is the most ridiculous thing I have ever heard in my life! Fire her and find someone else. Just because the sensation of one texture, on his skin doesn't send him overboard, what about all his other senses and textures? And eating is a whole other thing. I mean really...I'm angry for you.

[brittone2]

Now *that* is the most ridiculous thing I have ever heard in my life! Fire her and find someone else. Just because the sensation of one texture, on his skin doesn't send him overboard, what about all his other senses and textures? And eating is a whole other thing. I mean really...I'm angry for you.
Piggy backing on this, OP, how old was DS when they discharged him because he was playing w/ play doh without gagging?

If he was still *really* young he may have appeared to be "caught up" by traditional measures and evaluation tools. In some areas, EI won't really address just sensory stuff in and of itself (or at least, that was the case when I was working a few years back).

If he was very young when discharged from EI, I would pursue a re-eval. If he's older and can't tolerate certain sensory stimuli, it may requalify him, especially with the feeding component added in.

I'd definitely request a team w/ experience w/ sensory processing and related feeding issues see him for the eval. Push a little bit when you speak to the intake person and or your old service coordinator.

Some of the sensory stuff is also impacting him at preschool based off of your previous descriptions, so I would raise that issue as well.

[lmh2402]

Wasn't the initial EI eval a while ago?

the initial eval was Nov/Dec '10 - so DS was 18/19 months. and they kept us with services (minus OT) - they provided a behavior person that was a joke, a DI that did help DS evolve his play skills, and a feeding person - until Aug/Sept '11, at which point DS was 2 ys, 4/5 months


Now *that* is the most ridiculous thing I have ever heard in my life! Fire her and find someone else. Just because the sensation of one texture, on his skin doesn't send him overboard, what about all his other senses and textures? And eating is a whole other thing. I mean really...I'm angry for you.

no need to fire her, as THEY dropped US from their OT services a year ago - last Jan/Feb, but as i said - no great loss, as the woman really wasn't helping us at all. and we are now in private OT with a place that is really wonderful, with truly wonderful therapists and DS' progress has been tremendous because of/with them


Piggy backing on this, OP, how old was DS when they discharged him because he was playing w/ play doh without gagging?

I'd definitely request a team w/ experience w/ sensory processing and related feeding issues see him for the eval. Push a little bit when you speak to the intake person and or your old service coordinator.

Some of the sensory stuff is also impacting him at preschool based off of your previous descriptions, so I would raise that issue as well.

they discharged him from OT at somewhere between 22-23 months.

honestly, i just don't have much faith in the service coordinator i dealt with before - she was nice, but that was about it.

and i also know that in their minds, they had already been providing us with "THE" best feeding person they had. so we would end up with that same person again.

the OT gym happens to also have speech - they focus on those two specialties. i'm going to press the OT again tomorrow when we have therapy. in the meantime, i called the dev pedi yest and got the number for where they refer for sensory-related feeding issues. will call them today.

meeting with child psychologist tonight. and have appt with ENT to discuss possible apnea tomorrow morning, before OT

how many more darts can i throw at this board?!!!

oh well. wish us luck.

[brittone2]

the initial eval was Nov/Dec '10 - so DS was 18/19 months. and they kept us with services (minus OT) - they provided a behavior person that was a joke, a DI that did help DS evolve his play skills, and a feeding person - until Aug/Sept '11, at which point DS was 2 ys, 4/5 months



no need to fire her, as THEY dropped US from their OT services a year ago - last Jan/Feb, but as i said - no great loss, as the woman really wasn't helping us at all. and we are now in private OT with a place that is really wonderful, with truly wonderful therapists and DS' progress has been tremendous because of/with them



they discharged him from OT at somewhere between 22-23 months.

honestly, i just don't have much faith in the service coordinator i dealt with before - she was nice, but that was about it.

and i also know that in their minds, they had already been providing us with "THE" best feeding person they had. so we would end up with that same person again.

the OT gym happens to also have speech - they focus on those two specialties. i'm going to press the OT again tomorrow when we have therapy. in the meantime, i called the dev pedi yest and got the number for where they refer for sensory-related feeding issues. will call them today.

meeting with child psychologist tonight. and have appt with ENT to discuss possible apnea tomorrow morning, before OT

how many more darts can i throw at this board?!!!

oh well. wish us luck.

How frustrating. You are doing an amazing job advocating for your son. I wish you the best and hope you can get some help. The feeding and behavior issues are things you should not have to navigate without professionals helping you through it. :hug:
Hopefully the lead from the dev. ped will work out. That person may also have some other leads and suggestions for your other concerns.