Intro: 30 month old daughter w/Hypotonia & speech delay.........

May 22, 2002

My daughter is almost 30 months old and only has a diagnosis of

Hypotonia with speech delay. It's frustrating as no one seems to be

willing to go any further with a diagnosis. She does see a

neurologist every 6 months (next appointment is on Monday). Her

Hypotonia is very misunderstood as the therapists do not seem real

familiar with it. From what I have read online both DSI and Apraxia

are common amongst Hypotonic children (and I feel she might have

both). My daughter has no consistant words. She does spout out a

word on occasion (at the correct time), but every time I get excited,

I then see that I am either never going to hear it again, or hear it

only sporadically. The SLP at the center where my daughter goes is

not experienced with Apraxia. She doesn't think has it, but

has used no tools to make this assumption. can pronounce some

single words clearly (though she does not use them consistantly), but

when she strings them together such as in the Barney " I love you "

song, they become a garbled mess...that I only understand as she has

the tune down of that song very well. As she has Hypotonia (low

muscle tone), that very well could also be playing a part in her

delay. I have yet to find someone in our area that is familiar with

speech delayed children that also have Hypotonia and DSI. My

daughter's sensory issues consist of toe walking (though she can come

down when reminded), drooling, mouthing objects, sometimes appearing

deaf (though this has approved). She has had an ABR test earlier

this month and her hearing is fine. So far her Neurologist will only

commit to a diagnosis of Hypotonia (this is genetic as my father-in-

law & brother-in-law had it) and a speech delay. He did rule out

Autism though. As a lot of Hyptonia, DSI, & Apraxia symptoms can be

simular to autism, I am forever having to listen to people suggest

that she might have it. I would love to get her evaluated for DSI &

Verbal Apraxia, but the EI (Regional Center) seems reluctant to give

her any more. She'll be 3 in December, but I am wondering if the

school district will be any easier without a formal diagnosis.....

I have had her on ProEFA for a month now (2 a day) as well as 1 DMG

tablet a day too. I had bursts of new words with both initially, but

it seems to have reached a plateau with nothing new recently.

I am always looking for advice, information, suggestions as well as

referrals to SLP's and Parent Advocates in the Orange County, CA

(we're in South OC) area. Thank you for reading this far.

Jill - Mom to (almost 30 months) with Hypotonia & speech delay

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