April 22, 2012,
D.M. asks from Houston, TX on October 07, 2010
Son Diagnosed with Polymicrogyria
I had noticed my son was favoring his right hand over his left and started to leave his left hand in a fist anytime he was doing anything. I brought him in to get checked out and they decided to do an MRI to see if he maybe had a stroke at birth and found that he did not have a stroke, but he has Polymicrogyria on the ride side of his brain. He is 10 months old and so far the only symptom I have noticed is that he doesn't use his left hand very often and whenever he tries to concentrate on something he makes a tight fist with the left hand. He also does not crawl normally, but does a commando crawl (which I know is normal for kids to sometimes never crawl normal and can go from army crawl to walking) but even when he does the commando/army crawl he only uses his right leg to push himself. He does use both hands, but the left is usually in a fist. Normally he will use that arm for playing and hitting buttons, but his fine motor skills (picking up food and passing toys from one hand to the other) is definately lacking. I got him enrolled in Early Intervention in IL and they started him on Occupational Therapy 3 weeks ago. The therapist said that he is doing great and that they are going to look into starting Physical Therapy as well to better his odds. What they don't know is what I am in for in the future. Everyone I have talked to (doctors/therapists) have all said that he is doing very well, but they won't even tell me what they THINK will happen in the long run. If anyone has any information or experiences they can share with me I would greatly appreciate it. As of now I have only been told to watch for seizures and continue with therapy....I would just like to hear from people that have dealt with it.
C.B. answers from Jacksonville on April 22, 2012
I just wanted to take a moment to let you know you are not alone! There are actually many of us! PMG is a disorder with several known causes, one of which is cytomegalovirus (CMV) infection during pregnancy. Other causes can be lack of oxygen to the baby during the time the brain is in early development, genetic mutations that are not hereditary, hereditary, parvovirus, and much more that they haven't even begun to know!
We have an extensive website at www.pmgawareness.org as well as a nonprofit organization. We have a "Contact a Family" program and I do know that we have several family members in the Houston area.
I hope you will take a moment to explore our website. Also, I would be delighted to answer any questions or to help you find a Contact closer to you. You can email me at ____@____.com.
There are also FaceBook support groups. If you need more information about them, please email me.
I hope you will join us in our fight to make PMG as well known as all the other major childhood diseases and disorders!
C. Byrge, R.N.
PMG Awareness Organization, Inc.
T.T. answers from Chicago on October 08, 2010
my cousins child had this issue with her foot. I dont want to scare you but i will tell you our story, in a VERY brief form...turns out we carry a mitochondrial disorder in our family and that can be brought out by toxins. her foot got worse and worse and after her last round of vaccines when she was 15 months she stopped walking together as the disorder was full blown. According to the neurologist had she not received her vaccines she may have not developed it at all, or it wouldnt be as severe. Please keep in mind this is a short version of this story, good luck
J.M. answers from Boston on October 08, 2010
This doesn't apply to me directly, nor will this case be the same as what you are experiencing, but you might want to check out schuylersmonsterblog.com - it's maintained by Rob Hummel, the author of Fighting Monsters with Rubber Swords, a book about his daughter. I believe she has different disorder that is often "lumped in" with polymicrogryria. It might be a good jumping off place to connect with other parents given the same diagnosis. Best of luck!
S.S. answers from Chicago on October 08, 2010
Wow I was just reading this and while I do not have an answer I just wanted to say this: in this world we don't often hear about some of these things, but you are very brave and loving heading into a future with this. I wish you all the best.
S.E. answers from St. Louis on August 30, 2011
Hello. I have a daughter with unilateral PMG. Please email me at ____@____.com
I would love to discuss our situation. It sounds like our children are very similar. I would love to hear from you.
M.L. answers from Houston on October 07, 2010
From what I know long tehrm effect vary greatly from person to person, it can be very mild symptoms to severe. Focus on how is doing now, and that can rule out thing such as severe mental retardation and the like.
"The diagnosis of PMG is merely descriptive and is not a disease in itself, nor does it describe the underlying etiology or cause of the brain malformation.
Polymicrogyria may in fact be just one piece of a syndrome of developmental abnormalities, because children born with it may suffer from a wide spectrum of other problems, including: global developmental disabilities, mild to severe mental retardation, motor dysfunctions including speech and swallowing problems, respiratory problems, and seizures. Though it is difficult to make a predictable prognosis for children with the diagnosis of PMG, there are some generalized clinical findings according to the areas of the brain that are affected."