Polymicrogyria

Poly = many  micro = small  gyria = wrinkles   in the brain.

That is the brain disorder my son was born with.  Truthfully for us, it is not a scary diagnosis.  Polymicrogyria can be a very scary disorder though, it all depends on how much of the brain is affected.  Greysen is lucky that he has it in one fairly tiny area on one side of his brain.  He can do everything a normal 18m old can do - just at a slightly delayed timeline.  There are some people with a profound disorder called bilateral persivilian  polymicrogyria, as well as bilateral polymicrogyria.  The youth who have those two versions of pmg are usually non verbal, wheelchair bound, cognitive delayed, and have other health problems as well.  Most people who have the 2 versions mentioned about have a lot of seizure activity, which then harms the brain further. Some children pass away at a young age because of seizures caused by PMG. It can be a very sad diagnosis.

So how does PMG effect Greysen?  Well, we have only had developmental challenges, but will likely have educational challenges once entering school due to the area of his brain affected & the general thought he probably has some amount of brain cell disorganization.  We are lucky he has not had a seizure yet (although we did have seizure scare early on)  but he has a much higher than normal risk of having one.  But the good thing about PMG is it is not a degenerative disorder.  Once the damage is done, it is done. Seizures can cause more damage to the brain though. 

So is Greysen in therapy? What is the outcome?  Greysen currently is not in therapy.  He graduated PT. He completed all his goals.  He started PT when he was 9m old. He was not crawling & had mastered sitting just 2 months earlier when we started.  He also started speech therapy about the same time & has since completed those goals as well.  He is on a recurring check for both speech & PT.  He is also followed by a developmental team from his birth hospital. Recently had an eval from them & they are concerned he is behind on knee strength & agree his arm/hand favoritism is a little odd.  We know he will need an occasional "tweeking" of therapy.  Knee therapy will be conducted at home by mama...  Pretty much have to have him walk up & down steps-not crawl. 

The outcome for Greysen is unknown. At this rate - good with a few set backs here and there.  The real question is will he have seizures? That we wont know until he has one.  He likely will have trouble with school. Probably wont qualify for an iep (we have time to guess if needed) but may need extra teaching time.  His PMG is unilateral frontal, so that area of the brain is the reading/writting/general learning delays.

When we got the call for Greysen we were beyond scared & kinda stumped.  We were told he would need SOO much therapy - way more than he has had. And also we were told we would not need to be followed by a neuro - wich we were like huh? In the end he got a neuro after his hospital adventure @ 3m & we have been on the right track!

Greysen also has two other brain malformations that likly wont affect him, but may affect him.  He has absence of the septum pellucidum & partial agenesis of the corpus callosum.  So in other words he does not have as many wires connecting the 2 halves of his brain as he should. He also does not have the coating that covers inbetween the two halves of the brain & this covering covers part of the corpus callosum. These two items should have very little affect to him!  

If you want to read more about PMG please check out the following links!
http://pmgawareness.org/
http://raisingdanielhasselberger.blogspot.com/   she has a youtube as well. Her son is way at the other end of pmg
http://www.schuylersmonsterblog.com/ - he has also written a book about his daughter who has bilateral persiilan pmg