Re: just found out

September 7, 2003

Beth,

Forward's book Toxic Parents is also very validating. I got a lot of

relief for the PTSD when I went to a psychologist who does EMDR. Also you have

everyone's permission to cut nada off if you choose.

January 23, 2009

Kenya,

I am so sorry to hear about your son. I remember those terrifying

first days and please know that things will get better. Things will

be different from here on out, than you had planned for your life but

you will find you way in this new world of PMG and special needs. And

all of us here are here to help, so ask any questions you have!

Has your son had an EEG to rule out the seizures? Make sure to

continue to have this monitored!

The specialist for PMG is Dr. Dobyns. He is in Chicago. I would

suggest contacting his office and having your sons records sent to

him for review. He is way better at diagnosing these brain

abnormalities than a regular Neuro. This is his specialty! Below I

attached Dr. Dobyns assistants information. He likes to receive the

actual MRI films, not a CD copy, so you have to request and be very

specific that the actual films be sent or your doctors will send the

CD.

J. King

Research Coordinator

The University of Chicago

Department of Human Genetics and

DDRC - Developmental Disorders Research Center

920 E. 58th Street, CLSC 319

Chicago, IL 60637

mking@...

I am glad to hear your son is in therapies. Which ones? Have you

contacted your local school district for Early Intervention services?

All of the early intervention you can get is the key for your son to

progress as much as possible!

There is a convention this June in California for families with

children with polymicrogyria, lissencephaly, microcephaly. The groups

website is www.childrenwithmicro.org Check out this group and make

it to the convention if you can. We went to a convention the summer

of 2005 through a different group that has since fallen apart. It was

the best time, so great and I wish I would have found the group

earlier in my daughters life, so that I could have known and seen,

met, other children like her, other families like us!

Other programs that are out there for you to look into are 1)

conductive education, check out www.aquinas.edu/clc The school starts

babys in a parent child class or in private sessions. My daughter has

gone to this school for two years. It has dramatically changed her

for the better, opened her world up and I say that she is now alive!

I wish I had known of this school when she was a baby and been able

to start then. Families from all over the US come to Grand Rapids, MI

for this school for four week sessions, some families come for

longer, and some have rented apartments for the school year, so their

children can get the most benefir and stay all year. The school has a

full time session for children around 3 years of age to about 6 years

of age. 2) Intense PT at EuroPeds or Therasuit or like programs.

Strengthing is key. Keeping your son stretched out is also key. And

these programs work great at that. I am not sure how young they can

start but it would be worth getting the info now and asking the

questions.

Also, not sure what state you are in but you may be able to get your

son a Medicaid Waiver or secondary Medicaid to cover what your

primary insurance doesnt cover. Let us know what state you are in and

maybe there is a family from that state on the group that can point

you in the right direction, since every state is different.

Sorry this turned into such a long post, the words just kept coming.

Let us know what questions you have, let us know how we can help you!

Take care,

and Alyssa (5.5 years old, bilat fronto parietal pmg, spastic

quad cp, microcephaly, feeding problems, globally delayed)

>

> Hi, I'm a 29 yr old mother of 2 beautiful children. My daughter is

5 and my son is 7 months. My husband and I just found out that our

son has PMG. He is not able to to hold his head up all the way by his

self yet and he is not sitting up. The doctors said he may never

walk,talk, or feed himself or eat well. As you can imagine this is

the worst feeling I have ever felt and I don't know what to do. We

have started therapy but I would like to ask anyone what steps we

should take from here. He doesn't have seizures and I hope he never

does. I have never heard of this disorder until this Monday and not

sure what to expect.

>

> thanks so much

> hurting mother

>

January 23, 2009

Kenya, We found out that our son had PMG when he was around the same age

as your son. is now 11, so we've been through alot. The most important

step you can take..as you will here from this group...is to contact Dr.

Dobyns... he is the best doctor in the country, when it comes to PMG. You

will likely be faced with challenges... but you are wise to start therapy now...

we started in therapy around 6 months old...because like your son...we

notice his normal motor skills were not developing.

Please do not despair... and if you are hurting now... that is ok too...you

are entitled...but the most important thing you can do as his Mom is to put on

your best face...and start learning as much as you can from people like doctor

dobyns...etc.

I know exactly where you are emotionally... I have two other children...a

daughter who is now 13 (she was 2 when was diagnosed) and another younger

son... who is almost 8 (he is perfectly normal)... But it was really

devastating to find out that kind of news...and not know what it means. Most

of us on this group had never heard of PMG either.

The one thing that is consistent here... is that no two of these kids are the

same...some can walk, talk, and lead almost normal lives. My son... was more

severely affected...about 80% of his brain... and he started seizures at age

4. He can not talk, he is in a wheelchair, and at this point can no longer eat

by mouth (needs a g tube)..that is the bad part.... HERE is the best part... he

is extremely visually acute...studies everything..he laughs, he giggles, he

rolls himself around like a maniac on the floor, he walks IN a walker, and he is

the most handsome and beautiful boy in the world. Seriously...IN THE WORLD.

Sorry everybody else. But its true. LOL. We have been through hell and

back...but the good things out weigh the pain as time progresses... No one

knows why this weird rare malformation has happened to our kids....but the best

we can do is keep on keeping on. Your life will be more blessed that you can

even imagine.... but YOU have to chose to see it that way.

But Dr. Dobyns. in Chicago. Start there... please...they can help you

tremendously.

If you ever want to talk...please feel free to call..I live in Connecticut...

my number is and my email is jhasselberger@....

Sincerely,

, Mom to ...age 11, age 13, and age 8

Subject: just found out

To: polymicrogyria

Date: Friday, January 23, 2009, 10:20 AM

Hi, I'm a 29 yr old mother of 2 beautiful children. My daughter is 5 and my son

is 7 months. My husband and I just found out that our son has PMG. He is not

able to to hold his head up all the way by his self yet and he is not sitting

up. The doctors said he may never walk,talk, or feed himself or eat well. As

you can imagine this is the worst feeling I have ever felt and I don't know what

to do. We have started therapy but I would like to ask anyone what steps we

should take from here. He doesn't have seizures and I hope he never does. I

have never heard of this disorder until this Monday and not sure what to expect.

thanks so much

hurting mother

January 23, 2009

Kenya,

I am sorry to hear about your son. My son, Ethan, was diagnosed at 15 months.

I remember all too well the first weeks after hearing the same news. The thing

that helped me was to remember that Ethan was still the same child. The

diagnosis didn't change who he was. We are among the lucky ones. Ethan walks

and runs and communicates very effectively. He is bright and funny. He uses a

lot of sign language and gestures along with his vocalizations. And he eats

like a horse...anything you put in front of him. Outsiders have a hard time

understanding him, but those who know him understand him very well. At this

time Ethan has not had any seizures...we are hoping he continues along that

path, but are prepared for them all the same.

A book you might want to read is Schuyler's Monster, by Rummel-Hudson.

He has a daughter with PMG and wrote a memoir about his journey. And I would

agree that you need to send your films to Dr. Dobyns in Chicago, or Dr. Walsh at

Walsh Labs in Boston. They are working together on a study of brain

malformations. We saw Dr. Walsh and he did read Ethan's MRI scans slightly

differently than our neuro did.

The best news for you is that you know so early!! Therapy has made a world of

difference in Ethan's life. He responds to it so well. I always wonder how

much faster things would have progressed if we had known sooner. He sat up at

10 months, and walked at 34 months. Fight for everything you can get. Try for

therapy multiple times a week, not just what they offer you. The services are

available, and the squeaky wheel gets the grease!! Don't get discouraged by the

doctors when they tell you the worst...believe in your son and he will amaze you

daily.

Please keep in touch and use the board for any questions...everyone here is a

great resource.

Kate Ramsdell