dx is NDD--thoughts?

iVillage Member
Registered: 01-29-2004
dx is NDD--thoughts?
1
Tue, 12-20-2005 - 1:06pm

I am attatching what I have sent ot family as I just can;trewrite it all...It is long...

Well, Q has been diagnosed with NDD or Neurologic developmental delay. The
good thing about a delay is that you can often bring it up to speed. We
need to find out what is causing the delay. It is either excess electrical
(seizures) or chemical activity in part of his brain. The third casue could
be a tumor or degenerative brain tissue. The dr doesn't think it is the
last because he continues to learn and we don't see a regression in skills.
The paperwork is getting in order to have someone do an MRI to rule it out
though. Something I've learned is that the neuropsych who did all the
testing is a PHD and she can't write perscriptions for things like this. We
need to have a MD write the test orders. We are planning on switching over
Q's records to my dr who is close, covered and with XXXX hopspital. Q likes him
and he is young and more open minded and willing to do as I say, I hope...

So to find out if it is excess electrical energy Q needs to have a 24 hour
EEG done. We detested the last neurologist and I am in the progress of
getting us one at Children's Memorial. It looks like this appointment won't
happen until April.... If the EEG comes back normal we are off to a
neuropsychiatrist to find out about the excess chemical activity. Our
neuropsych really fells this is some sort of seizure disorder though. The
neurologist is someone who we will see for always-with 2x yearly checkups
regardless of the test outcomes.

To get to the bottom of why he has excess chemical or electrical activity, Q
will undergo chromosomal analysis. This should help us treat and also many
chromosomal thingies can affect later health. So this will pretty much just
give us info. I have this appointment scheduled for 2/14. This should also
be an ouchie appointment :(

All right, so what exactly is a NDD? Well in Q's case, part of his brain is
functioning at a 99.9% level which places his verbal and cognitive
abilities at a regular 8 year old range. The other part of his brain is
functioning at a 3 year old level. This is leads to one frustrated kid.
His eyes ar not tracking at the same rate which explains some school
hardships. Lined paper is difficult for him to use bacuse it is to visually
busy. If asked to divide 20 by 4 he can do it in his head. But if shown 20
objects, he could not draw lines to seperate them into 4 groups becasue it
is too busy to process. His perception is slower than it should be, If
told to line up, by the time it registers in his brain, the other kids have
already done it and he is frustrated bceause he is at the back of the line
again. He has a difficult time tuning out other stimuli to concentrate on
the task at hand. Where we can push the dryer sounds or someone on the
phone out of our mind to concentrate on a tv show, he hears it all. Swim
class which was typically a nghtmare was so not becasue he wanted to
misbehave, but the splashing, the echos of all the kids and instrcutors plus
the senses of the water would put him in overdrive and he just couldn't
concentrate. Hind sight explains alot....

So he has an appointment to with a pediatric neuro opthamaologist to rule
out eye problems and to make sure the tracking is a brain thing and not the
eye itself. That is 12/26. I have found an OT place for OT. We are
hoping insurance covers it, they are unclear...I am sure it will be about
the eye tracking and also fine motor. Most of his troubles will just appear
worse as he gets older and more is expected of him, so we need to help with
those delays. Over all, medication seems to be the answer to help with the
excess chemical or electrical energy. There is some osrt of brain training
that or neruropsych offers which is not covered by our insurance but looks
like will pursue. Also some type of filtered music therapy (thanks to the
K12 board I knew to ask about his) that should help with his ability to
concentrate.

Overall the dr was postive , upbeat about Q and thought he was a delightful
kid. See did mention that he does share traits with Apergers and Tourettes,
but she was not ready to dx as such becuase he has traits not associate with
them too. She did tell us that when we get this glitch straightened out, we
sould expect a significant IQ jump which kind of freaks us out... He
already seems ahead of me! We are hoping to have a handle on things by
summer and have some type of theapy schedule in place by then...

This I am adding for this list-his AS traits are obsessive interests, poor body language and facial reading except for DH and I (he reads us well), monologing, behind social skills though he wants friends he just doens't get the give and take... He also has some motor tics that may be siezures-didn't show up on first eeg. Thoughts? Thanks Heather

iVillage Member
Registered: 03-28-2003
Tue, 12-20-2005 - 4:56pm

Heather,

First, hugs, and a lot of them! I agree, he sounds delightful to me. He sounds, actually a bit like my kiddo. I call my son a platypus, as he is not an Aspie after all.

You sound like you are on a great track, so I do not have too much advise or thoughts for you. One thing I'd look into, though as it might be faster, would be vision therapy offered by a vision therapist. This is like OT for the eyes and is usually offered by an optometrist. However, it sounds like the docs are in the process of ruling out some more serious things. If it were me, I'd sort of wait, and if the Optometrists sort of say it isn't anything serious and send you on your way, but you feel like he isn't tracking right, then I'd look into VT.

Also I'd look into Central Auditory Processing Dysfunction. I think Bari, our Speech Path, is on the board, so I'll let her explain what it is better, but from your description of Quin, in sounds to me like certain types of sound overwhelm him, and if that is the case, it may be a CAPD thing.

Mostly, though, if I were you, I'd do what you are doing. You sound like a great mom and a wonderful advocate for your child. Go girl!

Sio