daughter diagnosed with oral apraxia

November 26, 2009

hello---i live in pittsburgh and my 4 yr old daughter was just diagnosed with

oral apraxia.....she was diagnosed with mild hypotonia when she was 15 mths old

and an expressive speech delay with also some dev delays (gross motor,

etc)....we started speech and pt at that point (private and homebased)....took

her to a ped neuro here in pittsburgh and she ordered an MRI....came back saying

she had some mild PVL (but dr told me the MRI was NORMAL!!!) took her to johns

hopkins hypotonia clinic and didn't get any answers either....(last august)

went thru the genetics testing here in pittsburgh and a few things came back

abnormal....referred to dr bruce cohen at the cleveland clinic (mitochondrial

specialist) and he gave us the diagnosis of oral apraxia yesterday....he also

thinks she is MICROASPIRATING and that she doesn't have ASTHMA! i have always

thought she didn't have ASTHMA b/c the meds NEVER work!!! of course the

pulmonologist here argued with me about it but now i am SOO glad i went for a

second opinion and didn't just settle for the ASTHMA diagnosis....she is having

episode #4 since august right now!! the poor kid is aspirating!! i did push

for a barium swallow test with the dr here in pa and it came back that she was

penetrating thin liquids into her vocal cords!!! anyways---we go back on jan

6th to a pulmonologist at cleveland clinic that specializes in

microaspiration...anyone in the pittsburgh area have any suggestions of what to

do? i live in the plum area and drove over to mcmurray for 2 years 2 times a

week for therapy....i stopped back in august b/c she was so sick with this

aspiration stuff AND i was just tired of the drive over there....(i also started

back to work so adding that drive weekly was taking a toll on me) dr cohen also

wants us to look into a feeding program (i am thinking of going with the

children's institute??) for her swallowing dysfunction....anyone have any info

they would like to share??? THANK YOU!! kim (mother to mary kendyl age 4)

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