Pachygyria Member Introductions

#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Pachygyria. For the discussion boards, we ask that you keep your full name and location private.

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#5

Hi

I have two sons who have Pachgyria. They both attend mainstream education and have crossed significant milestones. They have epilepsy and take anti epilepsy drugs which are not really making much difference at the moment. It's very hard to just live day by day and not think too much about what the future holds but i hope God willling it's a bright one.

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#6

I am a mother of a wonderful little girl,9, who has pachygyria and as she’s getting older I am seeing how different she is compared to others her own age. It’s hard for me and I know it’s hard for her as well. I am wanting as much info on this subject as nobody seems to know much about it. I am wanting a support group as well as being supportive to other’s if I can be. Any help would be greatly appreciated.

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#7

My interest is as a parent. I hope to continue to learn and connect with other parents of children like my son.

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#8

My daughter, age 6, was diagnosed with Pachygyria at 19mos. of age. She has not had seizures yet and so far is doing well accept for delays across the board. She has educational labels of Autism and MR and attends a school where she is part of an Enhanced Autism Program. This has helped her tremendously. I like to stay posted on any new information regarding this disorder and what treatments parents are using to treat the seizures that usually are part of this disorder. Thanks.

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#9

My son Reisse is 6 years old and has bilateral pachygyria.

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#10

Hi, I’m Kay. I have a 6 y.o. boy, Jared, who was diagnosed with Pachygyria when he was two. He went to a special preschool when he was 3 and 4 and received speech, PT and OT. He just finished Kindergarten and will go to 1st grade for the 2007-2008 school year.

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#11

Hello my name is Rebecca and my little boy who will be 6 years old on June 26 was diagnosed with Pachygryia at the age of 6 months old. He has behavior issues,ADHD,OCD, Austic tendoncies that all are related to this. Does anyone else’s child have these problems as well?

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#12

My daughter is 15 and was diagnosed with pachygyria 2 years ago. I need some support. I cannot seem to get any questions answered from the medical world BUT give medicine.!!! I would love to connect with other parents or anyone who could just hear me and perhaps just be a support.

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#13

Hi. I am the mother of Justin, 26 year old with pachygyria. Saundra

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#14

My daughter, Elizabeth, has pachygyria. She’s 18. Non-verbal, spastic quadriplegic. It seems there’s not a whole lot of info out there on this. I thought that with the passage of time and increased technology that we could find out so much on pachygyria. Am I looking in the wrong places? It seems the info I have found is 5+ years old.
I know pachygyria is rare. How rare is it? Are there current stats on it? What about long-term prognoses?
Thanks,
fstone48

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#15

My older son has pachygyria on his right parietal lobe. It’s part of an unknown syndrome with 100 other symptoms. He also has a metabollic disorder. He is 3.

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#16

My daughter has been diagnosed with microcephaly and pachygyria.

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#17

My 9 month old son was recently diagnosed with PMG and we are eager to learn more about it and chat with others who are going through this as well. Thaks for staring this group for us!

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#18

I’m a single mother of a 8 yr old that has pachygyria and cerebral palsy.

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#19

My son Nicholas was born with this condition. He is six now and will be starting grade 1 in the fall.

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#20

Hi All,
Can anyone tell me something positive I can tell my cousin who just gave birth to a newborm with Pachygyria? She had a hard time getting pregnant and is 36 years old, so this is her only child…a beuatiful baby boy.
All I know is that his condtion affects the frontal lobe - speech and motor skills. She and her husband are so upset that they cannot talk about it just yet.
I think all of you are brave and wonderful parents. :slight_smile: -Lin

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#21

You know she was delayed in all those things… I look back and she slept a lot, like 5 hrs at a time just home from the hospital. I thought I was just lucky. She hardly ever cried, and I remember after 6 months she still wasn’t grabbing her toys. She finally sat up on her own around 10 months and crawling around the same time.

She didn’t walk until she was 21 months and that is when I started freakin out to the dr’s. Before that she had like 2 episodes of seizures and had an MRI but everything looked normal at that time, or they just didn’t catch it.

She has always been a good 2 yrs behind but that gap seems to be widening. POtty training was a bear and seemed to take forever… we still have issues at times. She is very tiny, only 55 lbs and 11 1/2. What are the other brain issues your daughter has? What part of her brain is affected?..

My email is mikeandkim2@verizon.net if you email me then I can also let you know my number if you want to call…

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#23

My daughter is 4 months old and recently diagnosed with pachygyria, schizencephaly, agenesis of corpus collosum and colpocephaly. I’m in need of support form those who have been there or currently going thru it. Thanks!

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#24

Hi kj, I forgot I was even on here until I saw your post today… My daughter has been diagnosed with pachygyria for almost 6 yrs. she is now 11. Its quite extensive throughout her brain, the frontal lobe, parietal and temporal lobes. She’s had delays since infancy but continues to surprise even the dr’s. We were told she would probably never write and to get a computer for her but she does write and as far as I’m concerned, she writes pretty well for her disability. She reads amazingly well but has a pretty difficulty time with math. My point is there is just no way of knowing what your daughter is or is not going to do at this point. We still don’t know where our daughter is going to be and that is extremely difficult and frustrating! However we did just get the label “developmentally disabled” which was bitter sweet. I pulled her from public school to homeschool her a year ago because we were getting limited services. My point is on that, follow your instincts on your daughter… You are the mother, you are with her day in and day out and connected to her like no one else, do not doubt yourself! It has been very hard to find support since every child is affected differently. Some children are affected lightly where nobody would ever know. Some you can tell as early as infancy how extensive it might be… Or as in our case its been more noticeable in the last couple of years and I feel as if we’re starting over with our diagnosis. There is a dr. in Chicago named Dr. Dobyns… I never did meet with him or send my daughters MRI to him. But you can send the MRI and he will evaluate it and is highly knowledgable in lissencephaly and pachygyria. I’ve heard wonderful things about him and you can google him, if I remember correctly he’s easy to find. I hope this helps you in some way and honestly if you need to ask any questions I can answer how its been for our family.

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