My son is 13mos. He has "low muscle tone". We do not know why. We just noticed an extra flap of skin attached to his tongue. It looks like a tiny mini tongue. When you look into his throat you do not see it. When he coughs it comes up and forward. It curls just like his tongue. It is attached to the base of his tongue in the back of his throat/mouth. My girlfriend says her son has low muscle tone due to some rare disorder. By 2 he wasn't speaking yet so he was evaluated and that's when they discovered this extra piece of skin in the back of his throat on his tongue. What is it? What is the name of the disorder? Why does he have it? Thank you so much for your info. Teiko.
What you have described may be his epiglottis. It can be seen in young children when they yawn, cough or open widely.
I've never seen or heard of an "extra tongue" in any craniofacial or genetic disorder.
I suggest you take him to a Craniofacial Center if possible. They are usually located within a large hospital. The other consultation would be with a Speech Pathologist. They are well trained on evaluating not only his speech but swallowing and throat muscle function.
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