Can a Neurologist be of any more help?

[Lisa89]

My now 5-year-old son was born prematurely, was IUGR. He was 30 weeks, but weighed only 734 grams.  His primary problem now is Sensory Integration Dysfunction.  As is typical with this problem, he has problems with fine and gross motor skills, motor planning, processing sensory information, transitioning between tasks, attention, behavior and on an on.  He may later be found to have ADHD, but as this overlaps with SID and the two are often mistaken, I'm not sure. He also, however, has many neurological immaturities.  For instance, he still demonstrates "mirroring" with his hands...if doing something with one hand, the other hand is making the same movement non-purposefully.  This is lack of bilateralization.  He also has many reflexes which should have been gone a long time ago.  It took him until 5 years of age to be potty trained because he didn't have the sensation to realize when he was wet.  He also didn't have the core strength to be able to push in a sitting position to have a bowel movement.  

He is in a wonderful pre-school and receives outpatient physical and occupational therapy at a clinic that specializes in Sensory Processing Disorder (the new nomenclature for this problem).  I am a Speech-Language Pathologist by trade and have taken several courses on this topic so that I have a pretty good understanding of it.  

My question is this.  We have been followed by a Neurologist since he was very young.  We only see him once a year now.  We've already been through two different ones.  The first was beyond retirement age and didn't believe that SID existed.  He said that my sons problems were behavioral because we didn't discipline him right.  For example, when my son wouldnt walk for him, would only run, it was a lack of discipline.  In reality, his OT was working on his regulation so that he could learn to walk in school rather than run.  He couldn't tell the difference.  We are still working on that several years later, although it is better. There were many other problems with him too. I don't care for the one we've seen for the past two years either.  (Yes, working in the medical field, I'm very choosy about doctors.)  He never listens to my concerns at all, brushes everything off as being "not concerning" (as a parent, a five year old not being able to potty train or not sleeping through the night are concerning).  His report is a repeat of what the OT/PT wrote to him. He always thought he knew more about my son in the ten minutes he spent with him than his parents or any of the professionals who work with him every day.  We have an appointment with a new Neurologist in Boston soon.  We've never been disappointed at this particular hospital and we've seen several other specialists there. At this point, is a neurologist going to have anything to offer on an ongoing basis?  I just don't know that we need to keep seeing one.  What should the role of a Neurologist be with a child like this, if anything?

Lisa

[Kevin Kennedy, Ph.D.]

It is wise to have this evaluation by the new neurologist because of the apparent immaturity of some aspects of your son's central nervous system. Now, there may not be any specialized intervention recommended beyond what you are already doing, but the occasional evaluation is important nonetheless. If your son did not display any of the traits he does, I wouldn't advise the input. BUt, with his history and current status, you are doing the prudent thing. BE sure to ask the neurologist's opinion about the ongoing role of neurology for your son. Obviiously, the answer to some extent will depend on what the neurologist observes.