Maria had her swallow study this morning and it didn’t go as well as we would have liked. It didn’t help that she had been sick all weekend, didn’t sleep well last night, is upset over her home being torn up, etc.
The scale of liquid thickness from thinnest to thickest is very thin (water), thin (regular milk), thick, nectar, honey, spoon, pudding. Because of her swallowing trouble Maria has been on thickness as high as pudding, although that didn’t last because it’s pretty much impossible to actually get spoonfuls of “pudding” thickness (which is really more like mucus thickness). For at least a year, Maria has officially been on nectar thickness, though we mix it closer to thick.
On this latest swallow study, they tried her on nectar and for the first time in many studies she aspirated, meaning some of the liquid went down her windpipe. More important, she didn’t choke or cough so it was “silent aspiration”. That means if she does aspirate we have no way of knowing – at least until she develops pneumonia and ends up in the hospital.
They tried her on honey thickness and she did fine so *sigh* the recommendation is to increase thickness back to honey for a while. We will work with the feeding therapist on nectar-consistency trials in hopes of getting her back down, but in the meantime we need the thicker consistency to be safe.
One thing the therapist giving the test noted was that it took her a long time to react to the thinner liquid in her mouth, which is why it was able to go down her throat. It’s like she didn’t feel it. The thicker liquid gives a stronger tactile signal so she responds to it. One thing we will work with is using temperature or strong tastes (eg lemonade, cranberry juice) to help trigger her response to thinner liquids.
The explanations of why she needs it and how she doesn’t react to the thinner liquid made sense but we are disappointed. We don’t like how badly the thickener constipates her. We are also concerned that there are no long term studies on the effects of large amounts of xanthan gum (the thickener) over an extended period. The previous generation of thickeners was corn starch based and, since corn starch turns into sugar in the body, they were effectively giving these kids massive amounts of sugar which led to increased incidence of diabetes later in life. Who knows what this new stuff will do?
We are waiting for the PT now then we are off to the resort. Cathy is hoping the kitchen will be done by the time she gets back but they are behind schedule. Yes, I know. I’m shocked – shocked! – that a contractor could be behind schedule.
In boring technical news, I upgraded the blog to Wordpress 2.2.1 over the weekend. That’s more a note to myself than anything else.