My great nephew Jude has been diagnosed with this condition by the good folks at The Mayo Clinic in Rochester, MN.
It's hard to understand exactly what it means, but the notes below are from a website all about Polymicrogyria Awareness.
The more we know, the better we understand Jude and how special he is. He's an active little boy, who loves basketball...born to the right family, eh? He's learning sign language, and starting to say names. He might have challenges in his road, but he has touched every heart near him and there is not doubt he is a gift to our family.
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Jens and Jude playing basketball.
Big Sister Stella getting ready for the jump ball toss. |
From the website:
May 7, 2012 at 1:46 am
Polymicrogyria- let’s
break this big word down into it’s basic parts. “Poly” means many, “micro”
means very small, and “gyria” is the medical term for the wrinkles in the
brain. So we have “many very small wrinkles in the brain”. During the baby’s
development in the uterus the nerve cells divide and make up the layers of the
brain and make the wrinkles (gyri) of the brain. With PMG, that process is
altered and it causes the brain to form improperly. It forms small wrinkles
which don’t process the information it receives like a normally formed brain.
This causes problems with functioning in the body much like a stroke can affect
the brain. Depending on what part of the brain is involved and how severe the
deformity is, results in the impairments that we see with PMG.
What are the “typical
impairments”? There are several different forms of PMG (see the RESOURCES tabs
for more information) . Common problems associated with PMG in general are:
swallowing and speech difficulties, reflux, seizures of varying degrees (about
90% are affected with seizures), developmental delays, lack of muscle
coordination, impaired mental cognition of varying degrees, and cerebral
palsy-but there can be many others. It can be mild enough to go undiagnosed and
they just get labeled as “developmentally delayed”, or “seizure disorder”, or
“cerebral palsy” if the child doesn’t have an MRI AND a specialized radiologist
who knows what it is they are looking at. Currently a LOT of kids are falling
through the cracks and that is why we started our organization.
For some it even
causes problems with vision, cognition, hearing, or even worse, breathing and
maintaining body temperature. Sometimes it is diagnosed alone or sometimes it
comes with other diagnoses, like cerebral palsy, epilepsy, hydrocephalus,
macrocephaly, or microcephaly (certainly not an all-inclusive list). All of
these are frightening at best, but when you add to the diagnosis the fact that
MOST healthcare providers have never heard of it and have no idea what can or
should be done, then you have a real crisis!
Perhaps, for most of
us, the hardest thing of all is not knowing what it means for YOUR loved one.
You see, PMG affects every single person differently. It may cause severe, even
fatal problems, or it might be mild. It is not uncommon for it to even go
undiagnosed when a person has a very mild form. Typically they may be just
labeled “developmentally delayed” unless there is a significant incident that
leads to an MRI and even then it can be difficult to diagnose. (In Brie’s, my
granddaughter’s, case it required a neuro-radiologist to diagnose)
One person may have no
seizures or mild seizures while another may have seizures several times a day
and at times not be able to get them to stop without injecting some seriously
strong medications. In the most severe cases the seizures may not stop, even
with these strong medications. Some parents face a terrifying decision to elect
to have brain surgery in an attempt to stop the seizures. Even then, surgery
can only help in some cases. Usually, they are the cases that are localized to
a certain target area.
In fact as an R.N., I
am embarrassed to say that I had never even heard of the term SUDEP. While most
people with epilepsy live a relatively healthy and full life, it would be remiss
of us as an organization not to provide this information to everyone who
accesses our website.
All of this can make
you hypervigilant. It can steal your joy and especially your peace of mind. I
would like to say that it gets easier, and in some ways it does. Eventually you
start to come know your little one and what is normal for THEM. You will adjust
to the situation but that doesn’t make it easy. There will be good days and bad
days. And so we learn to treasure every single good moment. Ultimately, I think
THAT might be the lesson in all of this. This is a difficult situation at best,
but the amount of unconditional love and joy that we experience is incredible.
We truly understand what it means to not take a single moment, a single smile,
a giggle, one bite of food, or a single step for granted. The things ordinary
people take for granted every day, like seeing your child reach for a toy,
suddenly make us squeal with delight! And so it goes. Our picture for ourselves
and our children may not be the one we thought we might have painted, but it is
it’s own beautiful original masterpiece. Unique and beautiful!
If I might offer one
piece of advice, it is that you can’t do this alone. You need a strong support
system. You may find that the people you were closest to become more distant.
They don’t know what to say or do, so instead of feeling awkward, they may pull
away. I would encourage you to open the conversation with them. Tell them that
you need their friendship. If you are at all like we are, we struggle to find
those who truly understand- those who are “walking the same path”. When you are
dealing with something so unknown, often it will turn out that the closest you
can get to one-on-one discussions with another person dealing with PMG, will be
right here on the internet. Hopefully, we can change that one day. But for now,
please know that there are many of us here and we care. We GET it! And we will
be here for you in ways that perhaps most of the people you know, can’t be.
~~Catrina Byrge, Brie’s
Grandma
