Does my daughter have NVLD?

Subject:

Comments:
: Hello all,: I’ve been reading a lot about NVLD the last few months with growing concern for my daughter, Gabriela. She was born very premature (28 wks), was diagnosed with an IVH (grade III) and subsequently hydrocephalus and a bought of viral meningitis. As a result she has undergone 8 surgeries to place and replace shunts — she has one on each side. It has been almost two years since her last shunt surgery, and she just turned 3 in July.: Everything seemed to be going very well for her, having avoided all of the really awful consequences of her medical history. Recently (in July) she was seen by a neuropsychologist who did a bunch of tests to judge her developmental progress. His report reads as follows (her age at the test was 3.0):: Verbal: age 3.8 : Spatial: age 2.0: Social: age 2.0: Emotional: age 3.5: Gross Motor: age 1.8: Fine Motor: age 1.8: In it, he is very positive about Gabi’s progress, and lists only one “disorder”, which he termed something like “motor delay.” He states in his report that there was “no evidence of non verbal disorders.”: However, having read the information about NVLD online, I am becoming convinced that my daughter has this condition. Things that concern me:: Echolalia: she repeats A LOT of what others say. She has almost no ability to carry on a conversation about anything that isn’t happening RIGHT NOW. We can talk about what she sees, what things are, what sounds they make, what she wants to eat or drink, what she wants to wear, etc. But when I ask her what she did at the Zoo two hours ago… no response. Worse, she’ll respond with memorized lines from “Lilo and Stitch” or from other sources. Something like “Gabi, what did you eat for lunch?” She answers, “Experiment 626…”: Clumsiness: she’s very hesitant, physically. She still cannot walk up the stairs, she crawls up very slowly. She withdraws from rough play with other kids because she gets knocked over very easily.: Verbal vs non-verbal IQ: the report shows her way ahead on verbal, way behind on non-verbal.: My biggest concern is her “conversational” or “narrative” skills. She seems to understand very little of what one says, unless it is confined to very narrow topics that are generally “descriptive” — what something looks like, sounds like, tastes like, etc — and “requests” — what she wants to eat, drink, wear, etc.: Even her requests are highly unusually — she says “do you wanna drink some milk?” which means that she wants some milk. She often repeats “do you want, do you want, do you want, do you want, _____?” or “lemme draw, lemme draw, lemme draw, lemme draw a ___!” By which she means (draw my a ___!). When we ask her to ask us “nicely”, she repeats a very memorized phrase — “Say Daddy, I-na-wanna have a _____!” All of these odd phrases she says in a very sing-song way.: Clearly, I’m a bit freaked out. My wife thinks that her current behavior can be explained by the fact that for the first year of her life she was in the hospital constantly, with multiple brain surgeries that have caused her to be a bit behind other kids in some areas. She always points out that Gabi new all her alphabet and how to count to 10 before she was 2 years old, and that she has a really good memory. (Like the fact she knows what a platypus is even though she has only seen a picture once.) But those things somehow make it seem even MORE likely that she has NVLD! : My wife thinks Gabi can’t have NVLD if that’s what the neuropsych thought. I don’t know… How critical is it that this disorder (if indeed she has NVLD) is diagnosed quickly? How much will early diagnosis help? A repeat neuropsych eval would be expensive, and she’s due for one anyway in a year. Should I schedule one sooner?: And finally, what do you think? Does Gabi have NVLD?: Thank you in advance for your honest answers,: Oscar

DISCLAIMER:NLDline is designedfor educational purposes only.  The contents of this website are not  medical,legal, technical or therapeutic advice and  must not be construed as such.  Theinformation contained herein is not intended to substitute for informed professionaldiagnosis, advice or therapy. Visitors should not use this information to diagnose ortreat NLD without also consulting a qualified medical or educational professional.

Theopinions and conclusions expressed on this site are those of the authors alone and do notnecessarily reflect the views of NLDline. NLDline does not necessarily endorse any of the opinions expressed on any  bulletin boards or chat lines. We reserve the right to delete messages from anyonline bulletin boards  if there is offensive language or for any other reason. Inaddition, NLDline is not responsible for the identity or intentions of those individualsposting  messages.

?1998 NLDline