Laryngomalacia rears its ugly head again

We met with Dr. Roy on Monday morning.  He is the director of Pediatric Otolaryngology at UT Houston.  He was the specialist that our pediatrician recommended us to see for a second opinion on Hannah’s vocal cord paresis.

Hannah had another laryngoscopy, her fourth one.  Still, it is the worst procedure EVER having to hold Hannah’s arms so they can stick a scope down her nose into her throat.  Sucks, sucks, sucks!  She ended up hyperventilating during this procedure because she was so upset.

I was able to watch the video when he did the scope.  He said there was definitely a bit of weakness of her vocal cords, especially the left one.  However, they do both move.  They are not paralyzed by any means. 

We saw her omega-shaped epiglottis (most people have horseshoe shaped), and we saw the incredible redness and swelling of her threat.  We also saw those two white extra pieces of tissue outside of the skin of her vocal cords (turned out to be just a normal finding).

He believes that she still has laryngomalacia and that she hasn’t outgrown it from when it was first diagnosed in November.  This would make sense since the only time she has breathing issues is when she is really active or very upset.  When she is just hanging out or sleeping, she has no issues whatsoever.

He also saw that she still has pretty severe gastroesophageal reflux disease, as her throat was swollen and red.  So the plan is to see Dr. V., Hannah’s GI doctor, to see if we could better optimize her treatment other than the 15 mg of Prevacid she has each day.  Obviously, this dose of Prevacid is not helping as much as Hannah  needs.   He even mentioned that Hannah may need a Nissen fundoplication possibly (we hope not!).  But that will be up to Dr. V and Dr. B., Hannah’s pediatrician, to decide.

We will be seeing Dr. Roy again in a couple of months for another scoping.  Now that we have a video baseline video to compare against, we will be able to see if her laryngomalacia and vocal cord paresis is progressing, improving, or staying stable.  This will be incredibly important in terms of seeing progression of her Gaucher disease.

Also, the possibility of a trach is put on the back burner – yay!  If at any point Hannah starts turning blue, has real difficulty breathing, or develops sleep apnea, etc., then the discussion will be brought up again.

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