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oandmplus1
member
Neurodevelopmental Specialist
oandmplus1
member
I have only posted here once or twice, quick background.... my DD had a congenital cataract, and also has Optic Nerve Hypoplasia (ONH) and Microopthahlmia. (Small eye and small optic nerve). ONH is often associate with delays and brain / hormone abnormalities.
Well the MRI of her brain is normal and her homone levels are normal. She has good eye sight in one eye, and the other we cannot be sure about until she is old enough to read an eye chart because of the ONH. We know she can see, but we aren't sure how well exactly.
She has Early Intervention, they come once a month, and my DH takes her to a play group that the PT does once a week as well.
The pediatric Ophthalmologist still has some concerns about her development and has sent us to a Neuro Developmental Physician. I am just wondering if any of you can tell me what they will do at the appointment or what to expect?
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Re: Neurodevelopmental Specialist
We see a Neurodevelopmental Pediatrician. Mainly, we see him as a back-up once a year to make sure we are doing everything possible in terms of therapy and such for Nate. Since we have done a lot of developmental screenings through school (local school for the deaf) we know where he stands in that regard. I am assuming they will do mostly parent answered questions and will observe your daughter. It is possible that they may send out a form or evaluation for you to fill out prior to your visit. Hopefully, someone else may chime in on what their experience was....
Our NDP has been really helpful in explaining the findings on Nate's MRI's-much better than our neurologist. He is the head of the CP clinic at Kennedy-Krieger in Baltimore and has described himself as someone who can help "drive your bus" of therapies and interventions. We have been really organized about Nate's records and therapies so we haven't really needed him in that regard.
We plan on using him more for referrals or ideas on therapies as well as a hook up for future educational testing. He has also told us that he can give us an idea of Nate's IQ range around age three based on a developmental IQ, but I am not sure I want to go that route or not.
I also wanted to mention to you that I learned about a new kind of doctor that we are taking Nate to called a neuro-ophthalmologist. He has nystagmus and is also doing an eye-roll behavior that we want to follow-up on. I had never heard of this specialty and thought I should mention it to you. Good Luck!