Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, March 18, 2012

The Long Awaited Swallow Study

I think we've been waiting to do a swallow study since we brought Asher home 3 1/2 months ago, but we had to wait until his tonsils and adenoids were out and he'd recovered from surgery. We needed the swallow study before we could begin feeding therapy.

He's recovered now, and I'm ready to get on with teaching him to eat!

I've had suspicions that he aspirates liquids. For those new to the world of swallowing issues, that would mean when a person swallows it goes down the "wrong tube", which would be ones airway and into the lungs. When Asher drinks liquids he sometimes sounds like he has residual stuff in the back of his throat. Also, he has a history of recurrent pnemonias, and while in the orphanage he was never given regular liquids like water or juice, instead getting "compote" which is kind of like blended fruit which is a little thicker than just juice.

On to the swallow study. As I suspected, Asher aspirates thin liquids, but both the doctor and I were surprised how badly he aspirates. The very first swallow completely coated his airway. You or I would have been coughing and sputtering, unable to talk and need a moment to catch our breath. But not Asher. Not only does he not have that protective reflex, but he didn't give any response at all. His eyes didn't even water. The doctor said, "He should be sick. He should have constant aspiration pneumonia with this level of aspiration. His lungs must be badly scarred."

Next we tried nectar consistency. He had a little bit of splashing in the back of his throat, but otherwise he did ok.

Then came honey consistency and he was fine with this. When he was given pudding consistency with chunks in it that would have triggered chewing, he just swallowed them whole. (which didn't surprise me at all because I've seen him do this at home.)

The only time a gag response is triggered is when he gets a LARGE piece that is bigger than his throat. Oh, but that's after it sat mashed up in his palate for quite some time and eventually the doctor scraped it off the roof of his mouth! It's good that he has that gag response, but its not a very strong gag which means he's really at significant risk of choking when eating anything other than mashed foods.

When the testing was done it was time to discuss the option. Asher has been running a low-grade temp for several weeks and has very severe night sweats. Both of these can be symptoms of aspiration pneumonia. He does not have any cough at all, and otherwise seems quite healthy. Because of the low-grade temp I'm not convinced he doesn't have something brewing. We asked for a chest X-ray but the Dr. didn't want to do one unnecessarily. I'll be asking our regular doctor about that tomorrow morning. We spent a great deal of time discussing thickening his liquids, the effects of that on his G.I. system which seems to get out of sync quite easily.

I don't know exactly what we're doing yet, but I do know that on Tuesday he will finally be starting feeding therapy! Oh how I cannot wait to have someone help me figure out how to get him eating real foods safely. I'm not telling Asher this, but I have a goal of September in mind, when he'll start first grade.


ME said...

you were right! So glad you got the swallow study done!

Kendrick came to me (at 2 yrs) not knowing how to chew- he would put food in his mouth, mush it around his mouth a few times and then swallow it whole...we thought we taught him by showing him exaggerated chewing motions etc.and watching to see if he learned it- he seemed to be doing well. Now he is almost 13 yrs old and he was out to eat at Logan's roadhouse with us- I constantly have to tell him to slow down- he (almost literally) inhales his food; I was shocked to watch him put spoonfuls of even soft foods- like cinnamon apples- in his mouth and basically just swallow! He does not aspirate liquids and does not have recurrent pneumonia so think we are fine there, but really? how do you just swallow food whole?

Let me know how the feeding therapy goes and what they tell you about the swallowing things whole.


Difference2This1 said...

So glad you got this study done so you know for certain what you are dealing with. Hope you can get the therapy started pretty quick. Wishing Nathan would move forward's quite a haul up there every week so I might ask soon if we can go to every other week. Our goal might be Sept also if something big doesn't start happening soon!!