Thursday, November 04, 2010

Dysphagia.

That is the fancy word for difficulty swallowing...it is also happens to be KayTar's brand new issue, apparently.

Yesterday, I noticed that she was chewing up a bite of her solid food, then spitting it back out. She did it at snack and at dinner, and both times she stopped eating afterward. She said the food was getting stuck in her mouth. I asked her what she meant and she said she was spitting it out because it wouldn't go down her throat. I asked her about her meals at school (breakfast and lunch) for the past couple of days and she told me the same thing about each of them, she tried her food, chewed it, but spit it out because it wouldn't go down. She was with my mom during the day on Monday, so I called and asked if she had seen KayTar eat any solids. She said she had given KayTar chips and guacamole, but she couldn't say whether she ate any chips or just the guacamole (which is a pureed consistency). I also talked to the pediatrician, who said that if it continues to be an issue, we'll need to see the ENT/get an upper GI with a swallow study done.

I emailed KayTar's teacher and school nurse, so they could keep an eye on her at meals. Although I think it is very unlikely because of how cautious KayTar is with food, I'd hate for her to choke and not have mentioned this issue to anyone in advance. At breakfast, the teacher sat with her and encouraged her to try her pepperoni, which she did...but she picked it back out of her mouth because it wouldn't go down. At lunch, she successfully ate a few bites of garlic bread and a pepperoni. At snack, she tried pepperoni again, but it got stuck and she spit it out. After school, she wanted to try bacon bits, so I gave her one and it went down fine...but the subsequent ones got stuck and then she was done. Trying to get some more information about what exactly is happening, I gave her some options to explain what might be happening:
1. Was she trying to swallow, but the food was getting stuck?
2. Was she swallowing, but then the food was returning to her mouth? (she has reflux)
3. Was she chewing her food, but losing track of where it was in her mouth, causing her to spit out her food? (she seems to only eat with one side of her mouth, which made me wonder about this)
4. None of these...something different that I didn't mention.
She maintained that she was TRYING to swallow, but the food was getting stuck. I'm perplexed. I don't think it is behavioral, because these are foods she likes. She could simply says she was done and no one would make her eat another bite. She's never mentioned anything of this sort before. She is fine with liquids and she ate a stage 2 jar of peas this evening without issue. I'm hoping it resolves itself soon, but I don't know how likely that is...probably about as likely as her participating in a swallow study. (Seriously, how do they do swallow studies on kids like her? I think there is about zero chance she'll willingly drink the barium and we can't put it in her g-button because that defeats the purpose of a SWALLOW study.)

13 comments:

Karishma said...

hmmm. is she starting to get sick, maybe? a sore throat or something of the sort that's just making her throat feel funny and making swallowing uncomfortable? it's basically the only thing i can think of, but who knows.

Kyla said...

I forgot to mention that I asked her about that last night, but she said that it didn't hurt, it just wasn't going down.

Assertagirl said...

Mysterious! I hope it resolves on its own without you all having to go through the swallow study stuff.

Your site is looking just beautiful, by the way!

mooneyequalsmc2 said...

Our little guy was wiping food off of his tongue too this week and when we got it checked out his tonsils were inflamed. I hope that you figure it out!

Xina said...

My 2 1/2 year old son does that too sometimes. He has low muscle tone and some sensory issues and the current train of thought is that it causes him some oral motor issues. He used to just stuff his cheeks to capacity, but I finally have taught him to spit it out on his own (I worry about choking too). He had "episodes" similar to what you've described Kaytar with vomiting, lethargy, going limp, "checking out" etc. when he was younger (knock wood it's been a while since his last one now). With him it seems to come and go. He'll have trouble for 3 or 4 days and then be okay again for awhile. His OT suggested using a z-vibe when he gets like that, it seems to help some. I think you can also use am electric toothbrush. She said the vibrations help to "wake up" his mouth so he can coordinate his chewing and swallowing better.
Good Luck! I hope she is doing better soon!

Kyla said...

She doesn't have tonsils or adenoids anymore.

I did think about the sensory issues, she has some oral planning problems...that is part of why I asked her about losing track of the food in her mouth. She uses a electric toothbrush regularly. I just don't know, but I do appreciate all the suggestions a lot!

Tassiegal said...

Could it be mild allergy? eg she has eaten something, had a mild reaction to it (ie slightly swollen throat) and its just taking awhile to go away? It could also be related to her vomiting on the weekend, in that she vomited some acid up, and her throat has swollen a little while it heals.

leah said...

Kyla, my little guy has intermittent dysphagia- we're not really sure why. Most of the time, he can swallow, but other times he chews food up and spits it out. We have a few clues as to why he does this (not sure if it fits your little KayTar, though):

1. Our little guy has severe GERD. We're not sure, but we wonder if the dysphagia gets worse when his reflux is acting up.

2. We also have some delayed gastric emptying. Again, we have a theory that when this acts up, he has more trouble swallowing.

3. Our little guy's pH/impedence probe showed a "longer than normal transit time" for food in his esophagus. Essentially, he has a mild motility issue in his esophagus. Again, not sure why- but perhaps it is worse at some times than others??

I hope you can find some ideas on why she's having swallowing issues. Nolan doesn't have a G-tube, but he wouldn't swallow the barium during his study. They ended up using an NG tube to get the barium to the back of his throat.

Having an undiagnosed condition is so frustrating!

Anonymous said...

Might it be a saliva issue? The foods you mentioned are kind of dry and oily. She doesn't seem to feel hunger so I wonder if it is because she doesn't salivate normally.

Bon said...

i don't know if this is in any way relevant, but my mom has dysphagia. has for 25 years now, eats mostly soft foods, like yogurt, cottage cheese, mashed potatoes. it's a motility issue that started when she was about 35, probably - still unknown - after a virus. with her, b/c she'd always eaten normally, there was no oral planning issue but also no ability to bring the food back up: she got it down to the point where it sat in her pharynx (i think that was it? ie. past her mouth) and just sat and she would clear her throat over and over and be very uncomfortable. food textures, for her, do make a huge difference. bread, chips, pepperoni, all impossible to eat.

is liquid still going down okay for KayTar? are there are softer foods she likes that you can try? (ie more guacamole?)

best of luck.

slouchy said...

my mother had this after her stroke. with oral therapy she was able to progress (albeit slowly) from liquids to purees and finally back to textures.

good luck to KayTar.

flutter said...

sounds kind of like accolacia which gets diagnosed as dysphagia a lot. My sister had it and it was kind of a mess

Beth said...

You should check out this website http://childrenandbabiesnoteating.com/ . It's all about kids with eating issues, why they don't eat and what you can do about it (testing and treatment). It's a great resource and has helped me with my daughter.
Hope it works out without the testing.