[Dysphagia] metachromatic leukodystrophy

[StephC6137 at aol.com (StephC6137 at aol.com)]

Hello all-
 
I have a little guy who is two years old who has just been diagnosed with  
metachromatic leukodystrophy. I am familiar with the disease process and have  
done some initial research, but I'm wondering if anyone else has had any  
experience with this. Mom wants me to continue to be involved to address  feeding, 
and I'm wondering if I am going to primarily serve as a monitor and  guide for 
diet modification as his skills decline, or if there is more I  should 
anticipate doing for him. Is it unrealistic to expect that I can help his  skills 
improve? Right now, he is chewing a variety of foods of varying  resistance, 
although sometimes swallowing without chewing sufficiently, and  resisting 
transition to any kind of cup (from the bottle). I suspect that the  latter is due 
to his difficulty managing larger liquid boluses. He has had a  swallow study 
last week which did not show penetration or aspiration, though he  has had many 
hospitalizations for respiratory illnesses, and has demo'd clinical  s/s with 
even the bottle.
 
I'd appreciate any input!
 
Stephanie



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