Have mommy-suspicions; can't wait months for answers!

March 8, 2009

Hi! I am Abby and my daughter is 2.5 years old. Her SLP is familiar with apraxia

and motor-planning " issues, " but doesn't feel comfortable giving a Dx yet. She's

noted oral right-sided weakness (drooling, tongue weakness, etc) and she has

facial hypotonia. So there could be a little more going on than just verbal

apraxia (articulation errors).

I read " The Late Talker " and felt sick. And cried. And i just get this sick

feeling that there's even more going on with my daughter than a speech disorder.

I just don't know what points of concern merit enough to be possible signs of

something. What does a kid have to look like to say they have truncal hypotonia?

My daughter has a " belly. " She's tough, too, and we joke about her not crying

unless it's " really bad. "

Some of her " symptoms " seem to cross in and out of a straightforward apraxia Dx.

I see a lot of Dx's coming from moms of 2 and 2.5 yos. There's a private

(doesn't bill insurance) neurodevelopmental ped. in my area, who is quite

expensive, but would this be helpful? One apraxia-mom and SLP told me a

developmental ped. usually relies on SLP's advice.

I feel like every day that goes by that I don't know what's going on is a waste,

and every day that I could be treating her properly could give her such a better

foundation.

I don't want to act irrationally, but it's hard not to.

Does anyone have advice on waiting for a Dx, or where I could go for one? She

has a follow-up speech eval at a hospital at end of April. I can barely wait

that long.

I know this sounds confusing, but I guess I kinda am--confused, that is. Every

time I think that I'll wait for the re-eval, then possibly look to a

neurodevelopmental ped. for more answers if they indicate I need to/...I read a

story like Tracey's, and it sounds like my child, and it makes me think " I've

got to have answers! " Every other neuro/or just developmental ped in the area

has months and months of wait-list.

Naturally, I feel scared and worried and guilty. But I 'm so ready to take

action, it just seems like there's so much " waiting " to do right now, and I

can't stand it!

Any advice?

I'm in greater Philadelphia-area.

Thanks!

-Abby

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