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Appt with a neurologist- what to ask/expect?

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My 2.5 yr old dd has been recently diagnosed with a sensory processing disorder and feeding disorder. She is a sensory seeker (crashes, jumps, climbs- knows no danger). She currently receives OT/ST weekly. Our state has qualified her for early intervention services. As part of EI, they scheduled her to see a neurologist in April; however, we were on a waiting list for an earlier appt and they called today to schedule for tomorrow due to a cancellation. So, I thought that I had 2 months to write down questions and think about what to expect, and the appt is at 8:30 am- so here I am begging for your ideas/suggestions on the neuro appt. What should I expect of a neurology appt? What questions should I ask? Thank you in advance!

BTW, she is my 4th child and my others have sensory issues too, but not nearly so extreme. She doesn't have other warning signs of autism and she is quite verbally expressive.



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Great that you got the appointment. Will you be able to bring someone else along? It is really helpful not to have to watch your child while you are talking to the doctor if possible. Far from an expert on this but as a parent I might ask if her balance and coordination seem okay, if she has any one side of the body weakness, if she's got any joint laxity/hypermobility, or problems with muscle tone. Not sure if any of those are a concern, but those are issues that sometimes go with sensory issues and where the neurologist may be able to give a more accurate and detailed assessment than the therapist.

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When I called a place a while back (decided not to go, but that's beside the point), the secretary said it would be much like Barbara described, with intake discussion, checking joints, tone, laxity, blah blah. She said they might send her to another building where they had some machines that could test further on tone and muscle responses, this and that. Nothing invasive at that stage. I got the sense it was a process.


The only real shocker thing is the possibility of a muscle biopsy. That's surgery and has multiple ways, options, and controversies. But that's obviously something that, if they bring it up, you have time to come back and research. There are some new blood/genetics tests for mitochondrial disorders and whatnot, so if the doc *brings up* the option of a muscle biopsy, that's what I would ask about, whether there are blood options.


They might mention supplements like carnitine or want to do some blood levels. But none of that is a big deal, just go with the flow I think.


Well that's great that you can get in.

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I agree with taking along another adult if at all possible. I did this for years. We would have the doctor do the exam and then the other adult would take the kids to the waiting room while I talked with the doctor.


Write down anything you can think of. Sometimes it is the little things that will point the doctor in the right direction.


My 17dd had a muscle biopsy for mitochondrial disorders but my 16dd only needed the blood tests when she was tested about 2 years later so I would certainly ask about blood tests if they mention a muscle biopsy.

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