My sons Dr. said he has decreased or decreasing white matter, Please tell me what this means

my son is 3 1/2 years old, they have done several tests last one has him as age 1 1/2 mentally he keeps going down hill, have been doctoring with a pediatric nuerologist for a few months really keeping me in the dark... well at the last apt. which was last week, they put him on risperdal for severe behavior problems. She also stated that there what decreased  or diminishing white matter, Ive heard her mention his right or left tempral lobes not sure which oneif that matters... but he has steddily been going down hill even with all the help they are giving him.... I am very worried, they have now reffered us to see a genetic specialist, which  we cannot see for 6 months. She says this is the last thing to check I guess to find out where this has come from.. well honestly I dont even know what it is... I did some research and found that the gentic doc we are to see, Is one of the best, but usually does his test on the already deceased... I am very worried becuz of what I have researched on diminishing white matter in a childs brain... Please help give me any answeres or clues you can,, I need to know the truth is my son dying or going to die, It has now been about 1 year since docs have found all this out... Any honest help Please... thank you concerned mom in North Dakota...

[Quixotic1]

I'm so sorry to hear about your son and his problems.  The news that he has decreased or decreasing white matter is very general.  I can't know what that means or what will happen to your son.  I wish I could be more help, but it's not possible.  My thoughts are definitely with you, though.  You need to ask the neurologist directly, even if you have to write a letter, "Is my son getting progressively worse?  Is his brain deteriorating?"  You need to know a little more to be prepared.  

I suspect that the neurologist doesn't know exactly what the problem is, and that is why he is asking for the consult with the geneticist.  Without a diagnosis he can't tell you what your son's course will be.  But he can likely tell you if the problem in your son's brain is worsening.

Let us know when you find out.  I'll' be thinking of you, Quix

[thesurfer]

that is craziness! you must be assertive! why ask a dr. over the internet?
call that doctor right now- wake him up-get the answers you need. Peoples brains don't just shrink. Ask the doctor why is my son's brain shrinking? what are all the conditions that can cause it. Is he a neurologist or not?!! He most definitely should know and if he doesn't then he is a quack!

regarding quix1 reply what a copout! Are you a doctor?!

[Quixotic1]

It does no good to discuss with a parent ALL of the things that "might" be wrong.   In fact, it just causes more terror and more uncertainty.   Many neurological conditions defy diagnosis despite the best minds of many departments of major research medical centers.  If the diagnosis is still unknown, the treating neurologist should be discussing with the parents the observed course of the illness - eg.  "the problem is stable" or "the brain is showing further evidence of damage."   I was urging these parents to ask for as much real information as the doctors have.  

I maintain that the physicians should be more open with these parents and tell them what they DO know.  Not all the things they don't know.  

I try very hard not to "cop-out."  Yes, I am a physician and I have been in this position before.  Parents are not encouraged or helped by a vague discussion of "maybe's."  They are helped by accurate reports of what is known and by knowing that you intend to keep looking and to ask other experts for help indoing so.  Quix