Posted by IntrntDad

Hello everyone,

Need some info and ideas regarding the condition of my 3 yr 1 month old son,
NetChild. First, regarding his diagnosis: A private neurologist had told us he
had Pervasive Developmental Disorder (PDD). We wanted additional opinion and
visited 3 more neurologists at major teaching and university hospitals all of
whom have said they do not think he is PDD. His diagnosis now is language
developmental delay and demyelination.

We had an MRI done which was interpreted by the radiologist as Periventricular
Leucomalacia (PVL) which means tissue loss of the white matter. 3 neurologists
subsequently studied the MRI and disagreed with this interpretation saying the
tissue was intact. They did, however, say there is a scar-like area on his
brain but do not know whether it will go away or not. One of them said this is
not responsible for his language delay and the other said he had seen MRIs
like this and it is really not a problem to be much concerned about.
Leukodystrophies and Leusosomal diseases were ruled out after genetic tests
were performed. They recommended we do an MRI every 6 months so we can track
the situation.

Now, as far as behavior, NetChild does not have too many unusual ones except
for some hyperactivity, babbling (mostly songs with poor articulation), and
often times looking into empty space expectantly (as if waiting for something
to emerge?) However, though he does not obsess with an object, he does not play
with toys appropriately either (does not show much interest, though he enjoys
playing at Discovery Zone and
mastered all the climbing and the tunnels there, enjoys swimming which he just
started). He does not interact with parents and peers on his own initiation,
though he enjoys being tickled and rough-played with (asking for "more!") when
we initiate it. Also enjoys knocking down objects we construct for him to
imitate and looks at us beaming and expectant so we may "punish" him.
Beginning of play initiation?

His receptive language is not bad. He has about 100 -- 150 expressive words
including almost all of the ones in "JumpStart Toddler". He uses his language
(up to 4 word sentences, mostly I want__, Give me__, It is my__) to have his
needs met, mostly food requests and favorite toys. His biggest problem, I
would say is ATTENDANCE and passing his time unproductively. They do not know
how to make him sit during circle time at school.

His biggest asset is academics. He can learn whatever you teach him. He has
mastered 10 colors, 17 body parts, he knows all the alphabet (identifies them
one by one) and numbers 1 through 10. (He can also ride a tricycle.)

Is anyone familiar with what we are dealing with and also recommed any material
that talks about issues like ours?

Any advice is appreciated and thanks in advance,
NetDad
intrntdad@aol.com

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