Swallow study results = more tests

mightmom13

So DD had her swallow study today and the good news is penetration with no aspiration of liquids. She would only eat one apple bit due to the food having stuff (barium poweder) on it - but the SLP did not seem to have any concerns to change her diet...other than nutrition and bites. I will get the formal report in a week.

Also more good news - the word sensory was used many, many times! Take that developmental ped and "sensory is nebulous!"

Un-official recommendation is increase food types, more attempts at a higher calorie drink (DD only drinks juice water), transitioning to a straw from sippy cup, and at least 20 min/week soley focused on feeding therapy even if it means in addition to her 1hr/week speech. Large delay in oral motor. Could be much worse, hopefully DD will start to improve so weight doesn't become more of an issue.

However, she said and showed me where the food is getting stuck above the esophagus and there is more testing for this? They have it on tape, said no repeat swallow for now, but did not say what this test would be. DD can't take much more, especially with outbursts starting during tests.

I did let my mom know of the results - "but this is something she can just grow out of right....why therapy" head hit steering wheel. I bought 4 children's hospital bracelets :P

JaysonandKristin

Does she possibly have some sort of dysmotility in the esophagus?

With my son's birth defect, I'm really, really all too familiar with diagnostics, probable issues, etc...  

Have they discussed the possibility of EoE if she's getting things stuck in there?  My first thought was dysmotility... my second was EoE.  

Has she been referred to a GI?  I'm sorry if this is all redundant, I haven't been "following" your story.  I just saw the original thread about this study being scheduled and this current update. 

mightmom13

JaysonandKristin:

Does she possibly have some sort of dysmotility in the esophagus?

With my son's birth defect, I'm really, really all too familiar with diagnostics, probable issues, etc...  

Have they discussed the possibility of EoE if she's getting things stuck in there?  My first thought was dysmotility... my second was EoE.  

It sounds like she was referencing some sort of dysmotility in the esophagus - unofficially I guess.

I kind of laughed when I read EoE because I had/have food allergy questions and though I forget the relationship between the two I remember it being referenced a lot when being very careful/reactions with dairy. So maybe! Wouldn't that be a circle! No other consults yet - besides hearing and EEG - though I want ENT, thought I might get that today and would not be surprised by a GI consult once the official report comes out. But I think I recall a scope being required (I am in respiratory medical field) for an EoE dx or rule out....which would suck.

Thank you for replying! Things like this is why I am so thankful for this board.

JaysonandKristin

mightmom13:

JaysonandKristin:

Does she possibly have some sort of dysmotility in the esophagus?

With my son's birth defect, I'm really, really all too familiar with diagnostics, probable issues, etc...  

Have they discussed the possibility of EoE if she's getting things stuck in there?  My first thought was dysmotility... my second was EoE.  

It sounds like she was referencing some sort of dysmotility in the esophagus - unofficially I guess.

I kind of laughed when I read EoE because I had/have food allergy questions and though I forget the relationship between the two I remember it being referenced a lot when being very careful/reactions with dairy. So maybe! Wouldn't that be a circle! No other consults yet - besides hearing and EEG - though I want ENT, thought I might get that today and would not be surprised by a GI consult once the official report comes out. But I think I recall a scope being required (I am in respiratory medical field) for an EoE dx or rule out....which would suck.

Thank you for replying! Things like this is why I am so thankful for this board.

There was a question about whether DS had EoE, and after a scope the GI told me immediately that it was ruled out.  So, yeah, I'm assuming you're right on the scope.  As for them sucking.... yes... they suck.

I would certainly push for a GI referral.  It seems only logical, right? 

fleurdlis

Great news that DD did not aspirate.  Sometimes, family and friends do not understand how much time it takes to reach these milestones.  My daughter passed puddings, nectars and honey, but aspirated the thin liquids.  But it took us a year of 4xs a week ST and lots of work at home to get to this point, and we could not be prouder of DD's hard work.