Parent to Parent support for kids with dysphagia and laryngeal clefts
A support group made up of parents of babies and children with laryngeal clefts or dysphagia of unknown causes.
Sydney had her first real nosebleed today. There was so much she was choking, coughing and spitting blood out. I know she aspirated, we could hear it.Just wondering if there is any better way to deal…Continue
Started by Kelsey Van Der Kley. Last reply by Kelsey Van Der Kley Mar 4, 2012.
Hi to you all,My name is Mark and I am the proud father of our 7 year old son who has Laryngeal Cleft Type I. We live in The Netherlands, Europe.As most of you know proper information about Laryngeal…Continue
Started by Marcos Antonio Jan 8, 2012.
I was told many times that with the lc repair it is so important that reflux be controlled. My almost 3 year old daughter's reflux often gets out of control. We have adjusted her diet and fixed her…Continue
Started by Margaret. Last reply by Kristina Sep 14, 2011.
Michael had another swallow study today and we saw something different than ever before...he actually had trouble with the solids. There was penetration and then on a potato chip it stuck where his periform(spelling ?) sinuses are and he didn't even notice or show typical signs of what should happen when a hard object gets lodged in an area where it shouldn't be. The therapist explained it as though his nerves do not respond appropriately, a sensory delay in the oral area. I'm not sure…Continue
After our visit to Shands in Gainesville we were left with the following:
Drs: "We can't find any other structural defect other than the Glottal chink, which can not be repaired, but even with that something is going on above that for the liquid to even get to that point, so here's what we feel is happening...Michael has an incoordination with his oral motor skills, rather an incoordination with his swallow that is allowing liquids to pass the epiglottis and seep into the opening…Continue
Tyler had a swallow study yesterday and passed with thin liquids for the first time EVER! All of the waiting and frustration FINALLY paid off WITHOUT having repair surgery. I wasn't sure it was going to happen, but it did! We have an appointment at the CADD clinic next week with Dr. Rahbar. Thinking of all of you!
Posted by Michelle on May 3, 2011 at 7:42pm
Just wanted to post that Tyler has a follow-up swallow study tomorrow afternoon and we are praying that he passes (obviously, isn't that what we all do lol!). It's been about 6 months since his last one and he's been doing REALLY well with thin liquids (no surgery, just slowly thinning). He hasn't had thickener in quite a while, so we'll find out tomorrow if he is still aspirating.........I really don't think he is, but I don't want to jinx it! I will post the results…Continue
Posted by Michelle on May 1, 2011 at 10:41pm
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