Banging Head Against the Wall... Again

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Banging Head Against the Wall... Again

Postby TiredMom » Tue Jul 21, 2009 9:12 am

Just ranting... So, Preston started with OT two weeks ago. They finalized their evaluation and I sent a copy to the NL and the NSG so they'd have it on record (we'd told them both that Pres was starting OT at the recommendation of his developmental pedi. as he has ongoing sensory issues and motor/balance issues). The nurse contacted me from the NSG's office this morning in a pissy mood--"Why hadn't we told them Preston had these issues?" Umm... hello... we've brought it up each and every visit and you guys wrote it off--no big deal. "Well, we didn't 'see' anything when we evaluated him!" Yeah, kinda hard to really get an idea of whether a kiddo has motor/balance issues without really observing him play and act naturally. The OT folks observed him over a period of hours; the nurse practitioners at the NSG and NL offices (both offices) took about 15-30 minutes to do this and he performs great on command when he's asked to--you really only catch these issues when he's NOT focusing on walking/running perfectly for show. So then I get a "maybe its his migraine medication.." Well, ya know, he wasn't on meds when they did the OT eval. He started them a week after the eval was completed. So, hey, I really don't think so. Now its, "Well, I guess we'll just have to call and talk to the OT." Yeah. You guys do that and get back to me later, hmm? GRR.
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at
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Re: Banging Head Against the Wall... Again

Postby lttutrow » Tue Jul 21, 2009 10:41 am

How frustrating!!! I wish there were a way they could hear these conversations from our perspectives sometimes.
Hearing your GRRR.... and empathizing with it!
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