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Hi everyone! I've finally had the time to write up the findings and

recommendations of the neurodevelopmental psychologist. We'll get her

written report in a week or so. Then the fun will begin. I am waiting for

the written report to try to wrap my brain around it all.

Here are the doctor's findings in a nutshell:

1. There are great variances in her scores: from the 1st percentile to

the 75th percentile.

2. These are most likely due to neurochemical inefficiencies.

3. With the way she presents, there is a 50-80% chance that there is

also a neuroelectrical component - ie: seizure disorder.

4. There is a very small chance of tissue damage.

5. IQ consistently tests in the normal range (85-105 on past scores

over time) so evidence that higher brain function is good.

6. Issues are in midbrain - the relay station for attention.

7. Her attention reflexes are impaired. Reflexes are things you cannot

control. This is different from concentration which is at our own effort.

She has good concentration.

8. Auditory, visual, and motor attention tests were all less than the

1st percentile.

9. Her spelling problems are related to oral-motor issues.

10. Auditory pathway is her best pathway - but auditory memory is bad.

11. Spontaneous language is good, but demand language is bad.

12. Has no internal speech. We need to narrate for her and help her

develop self-talk.

13. Mood brain is on high or low alert at any given time -

uncontrollable and unpredictable. A sensory room to relax and center

herself would be helpful.

14. Dx is PDD 2ndary to CHARGE (NOS)

The doctor's recommendations:

1. Rule out electrical issues via 24 hr EEG.

2. Rule out tissue damage via MRI.

3. We need to find a good pediatric neurologist with specialty in

electrical physiology.

4. Probably need comprehensive labs done if haven't been done recently

for something else.

5. If EEG is abnormal, probably can be helped with antiseizure meds

which would likely be short-term.

6. Probably needs a stimulant for the neurochemical issues.

7. Feldenkreis therapy - movement therapy - would be beneficial for her

- there is one practitioner on their website noted in St. Louis.

8. Should use the Listening Program at home.

9. Should use HandWriting Without Tears program at school.

10. Should develop a relationship with a child psychologist with

neurodevelopmental training for ongoing counseling in calming, relaxation,

etc. This may be more necessary as she gets older, but need to develop a

relationship now so that person is there and ready as needed.

11. At school, do everything right now to avoid need for placement in a

therapeutic school.

12. Should have a small classroom (ideally 5-8 students) with her 1:1

aide - need less stimuli than in regular classroom.

13. Consult with IATP, Easter Seals or someone else on technology.

14. Needs OT and PT.

15. SLP should continue with oral motor and auditory memory.

16. ABA therapy should be used to develop internal speech - recommends

direct work several times per week.

17. The dr has an educational director on staff who can consult with

schools to write up a specialized educational program. This is done by

teleconferencing and can be requested before the IEP.

18. Dr and staff are available for consult indefinitely into the future.

A few of the things we noted that made sense now - Night-time wetting is

common in kids with PDD because they sleep soundly and the midbrain is not

able to attend to the need to go potty. Yep, we knew that. She is so

engaged in her movies because they happen over and over in exactly the same

way so she has a chance to get it. Real life happens just once and that's

it. Movies are also a multisensory experience with little distractions.

The movie by nature focuses your attention on the important details and

helps you ignore the extraneous stuff. Life doesn't filter things and focus

for you like that. We know that she can do things when you feed it to her -

but her own spontaneous problem-solving is often not there. So our job now

- which we'll need some coaching on-is to narrate for her and expect her to

parrot back what she is doing so that she begins to have an internal

dialogue and doesn't rely on our external prompting.

I know there's more. much more. but my brain is fried.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ