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mekat 03-15-2013 08:26 PM

Need help from those with experience in severe feeding problems
My son is finally willingly opening his mouth for food and loves the yummy snack items I give him but he won't swallow it. Banana Vanilla pudding is the only thing he will "eat" at the moment. He scoops it out of his mouth constantly as soon as he has had the pleasure of tasting it either with his hands or a chewey sometimes even the bib.

Changing the texture or thickness of feeds is not an option as I said he has extremely severe oral sensory and feeding issues. I have actually yet to hear of a child as severe as him but I am sure there is someone out there worse off.

SLP thought it was sensory and tried the Z-vibe and that sent him into a sensory meltdown before even getting it into his mouth. The noise scares him. SLP is stumped and so am I so unless we figure out how to get over this hump therapy has completely stalled. SLP is going to ask other SLP's in her department but I'm not feeling confident their ideas are going to be much better so thought I might try to find some more ideas. At this point I am willing to try even a long shot.

FYI we know he can swallow but he has not been able to swallow enough to do a swallow study and the one time we attempted it any way (had to try as requirement to even start therapy at this hospital) he had an epic sensory meltdown even the SLP performing the test was shocked at the intensity of it. All I can say is the ER x-rays his lungs every time he presents with vomiting and the x-ray always is clear so if he aspirates it can't be very much.

ktmelody 03-15-2013 08:34 PM

Can you try popette, propreefer, or toothette to stimulate his mouth instead of the zvibe? They dont make noise.

How old is he?

My ds has awful food issues and he is 9. We didnt deal with it when he was little so now he eats very little. :(

mekat 03-15-2013 08:46 PM

Re: Need help from those with experience in severe feeding problems
We tried toothettes when he was younger and they didn't work but I will see about trying it again. They might go over better now that he is bigger.

His chronological age is 8yo, developmentally he functions on a toddler level around 18-24 months and size wise he is the size of a 4 to 5 year old (stunted growth due to genetic syndrome).

We just resumed feeding therapy last year. His biggest stumbling block before then was medical problems in the GI track; severe enough that oral feeds just were not going to be successful from a medical standpoint. He is just now medically in a place where we can try to transition to oral feeds again.

luvsviola 03-15-2013 09:11 PM

Re: Need help from those with experience in severe feeding problems
My son hated all of the sensory toys in his mouth. They wanted him to do an electric toothbrush. Total meltdown! He was only yogurt and half melted ice cream in the beginning. Then we added runny baby oatmeal when DD2 was born and she was eating it. The nice thing about oatmeal is that you can make it thicker to add texture gradually.

We progressed to ice cream with 1 sprinkle. Then ice cream and yogurt with 2 sprinkles. Then mom tried oatmeal with brown sugar sprinkles and regular sprinkles, letting him be the one to put the sprinkles in. Then we added yougurt with fruit in it to add a little texture.

I would honestly stick with the yogurt and try adding tiny bits of texture to one or two bites after a couple "safe" bites but before he is finished. And I'd only mess with maybe 2 bites per meal so you don't lose your "safe" food.

We also gave DS chewy toys to play with away from the table. He got so that he could tolerate chewy toys that did not have a flavor, but one crumb in there would make him gag and vomit.

Gradually, after the yogurt went well, we added in frozen Gogurts, which he liked a lot. He also got to like the fruit squeezes. This added new flavors, but was still safe. From there, we eventually were able to add canned manderin oranges cut up real small, and branch into juicy fruits with no peel.

I would try to contact the Food Chaining ladies. They are amazing at helping people go from one or two foods to more.

ssand23 03-16-2013 10:05 AM

My son is 3 years old and has severe feeding problems also. We are at the point where his diet is Neocate Jr only. I am thankful that he can manage that orally (he drinks from a baby bottle). But he can't even take oral medications. He has a severe sensory processing disorder that affects his oral motor abilities, among other things. He has a birth defect that left the right side of his lower lip paralyzed, low tone, severe food allergies, a blood sugar disorder (so trying foods throws off the carb, protein, etc balance leaving his sugars too low and risking an ER visit or 9 11 call) and the drs suspect that he has Eocinophylic Esophagitis and he has gross motor delays.

We had 2 times when we were able to get him to leave chewable benedryl in his mouth long enough to dissolve but now he's gagging on that, too. We have to do Tylenol suppositories for fever or go to the hospital for IV meds.

We are just about to start a feeding program at a national children's hospital. Between the allergies & EE, he may not have a bunch of safe foods but even if he had a couple & could manage oral meds, that would be awesome.

I'd see if there is a feeding program in your area. The programs range from more intense at a hospital to OT programs at a therapists office to help work with sensory issues. It can also be helpful if the sensory issues are affecting other areas, too.

Stephanie, mom to 3 big girls (10, 13 & 19) & 1 sweet little guy (3)

mekat 03-17-2013 05:36 PM

Re: Need help from those with experience in severe feeding problems
I realized by trying to hit every major point in my original post I messed up and forgot to type my request for targeted ideas on swallowing, opps. It was totally my fault. I specifically needed help figuring out how to get him to swallow. We spent a year just getting him to open his mouth willingly.

We had a huge back slide mid-year due to some severe GI problems ramping up. Hopefully knock on wood those issues are resolved but only time will tell. It has been weeks since he has asked for his Lortab or Codeine for GI pain management.

Thanks Kristen, I will keep the food chaining in mind for when we finally get him to swallow. Your tips sound great I'm just not sure he is ready to move forward yet.

Thanks Stephanie, unfortunately the local children's hospital doesn't offer inpatient programs and I don't have the funds to go out of state. Fortunately, his SLP is the best we have had of all his SLP's so far we have just hit a snag is all. I totally respect her ability to place ego aside and admit she needs better ideas how to address this. With my son many delays and medical needs I find far too often therapists try to pretend they can handle things when they can't. I can work much better with someone searching for a solution vs someone trying to make an awful therapy technique work when it clearly does not.

rumblepurr 03-17-2013 05:48 PM

Re: Need help from those with experience in severe feeding problems
:hugs: Does he suck on anything? I was wondering if he had to suck the pudding out of, say a baby bottle, to taste it, do you think that would help stimulate a swallow reflex?

luvsviola 03-17-2013 10:33 PM

Re: Need help from those with experience in severe feeding problems
You might have your SLP talk to one that works with stroke victims who have forgotten how to swallow.

You might also try lolly pops. I know in the NICU, they use them to teach kiddos to coordinate the swallow. Kiddo salivates, and has to swallow at some point. DS loved them because he felt like a "big kid" with them.

mekat 03-27-2013 05:16 PM

Re: Need help from those with experience in severe feeding problems
Thanks for the ideas. We specifically picked a SLP trained in Vita Stim (rare qualifications in our area) because ds hasn't had much opportunity to swallow. She thinks Vita Stim is unnecessary at the moment and he can be taught through traditional therapy. We had a small amount of success in his last therapy session so hopefully he will start doing better.

seanne123 04-30-2013 08:02 PM

Re: Need help from those with experience in severe feeding problems
I have no idea on availability of programs, but we went through a feeding program that was run by a psychologist. Pediatric Feeding Disorder @ Munroe Meyer Institute which is associated with University of Nebraska Medical Center.
The intense program was M-F 9-5 for 8 weeks and then weekly 1hr visits. We finally graduated after 17 months. They use a behavior approach that is individualized for each client.
It was crazy hard and at times I wanted to pull my hair out, but so worth it to have my girl eating!

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