Discussions By Condition: Brain conditions

pachygyria

Posted In: Brain conditions 19 Replies
  • Posted By: chris' mom
  • June 29, 2007
  • 02:57 AM

:eek: ive been looking for someone with the same disorder for 12 years to chit chat and compare. patchygyria is rare. im hoping to find someone here...

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19 Replies:

  • Unfortunately, I am new to this. My daughter had her first seizure the other day and we just got back from the hospital today. She was diagnosed with pachygyria and cortical dysplasia. I was just starting my research when I saw your posting. Anything you can tell me would be helpful. I can share what we have been going through the last three years, but it seems you have been dealing with this much longer than us.
    Anonymous 42,789 Replies Flag this Response
  • My heart goes out to you and your family.is your daughter 3 now.i am not familar with cortical dyslasia but i feel i am a vetren of pachygyria.im sure every child is different to the ups and downs of pachygyria.but with my son he had his first two siezures the same day at three months and was siezure free for about three years. from here he had one a month and everytime he siezed they added a new medication and he got worse. it got so bad he only made it to school maybe once a week. he was so wiped and couldn't walk stight i had to keep him home.we had a vagal nerve simualator put in, which now is removed and placed him on the Ketogenic Diet.this worked miricals, he still has a siezure about once every 2-3 months. remeber the name of this diet incase you ever need it in the future. other than the siezure disorder chris is developmentaly delayed by almost half his age. he just started using short senteces and he does well at school.please let me know if you have questions about anything im here to help. i wish you the best of luck and hope for peace and only good days for you and your familyif theres anything you would like to know specifically please wright back.its nice to talk to someone after 12 years thats in the same boat.or at least knows what pachygyria is...thats not a child nerologist. thanks for your time Trish--
    chris' mom 1 Replies Flag this Response
  • Thank you so much for writing back. I am so sorry for everything you have been through. My heart goes out to you and your son and family.Yes, my daughter just turned three in June. Since she was born, they told us all different things that were "wrong" with her. They told us they thought she had Russell-Silver syndrome, that she would be deaf in her right ear, that she had hypotonia, and had hydrocephalis. They didn't know if she would walk or talk. The only thing they were right about was the hypotonia (low muscle tone throughout her body.) Since then, she has been genetically tested for every syndrome they can test for. She had four MRIs prior to the one they just did in the hospital and her other neurologist found nothing. (He once said something about the white matter but dismissed it.)This was her first seizure, although they think she seized, then we found her, then she seized again. I had trouble waking her from a nap a few days earlier, so I think she may have seized then also. Other than these few episodes, she seems back to normal. She has a twin brother and is about 10 - 12 months developmentally behind him. She can walk and talk and gets PT, OT, and speech.I am sorry this is long and I am being called in for dinner. I might have more questions once we follow up with the neurologist and geneticist. Thank you again for all your information.
    Anonymous 42,789 Replies
    • August 13, 2007
    • 10:39 PM
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  • My daughter, Allison is 2 and was diagnosed with pachygyria this past March. We knew something was wrong when she wasn't crawling or walking by her first birthday. She was 20 months when she started crawling and 22 months when she started walking, sort of walking. We've seen so many doctors and have had a lot of pt, ot, and speech. She's making some progress but as you know its going very slowly. I just want to know how you have coped with having a child with developmental delay. I still to this day feel as though I caused it. I don't know how but I feel like since she's my child, I must have done something wrong. Does anyone have suggestions? Where can I get literature? I'm desperate for a book about pachygyria. Thanks,Beth
    off2cthwzrd 1 Replies
    • December 18, 2007
    • 04:35 AM
    • 0
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  • I can understand the frustration and lack of information. My 3 year old, Mykel (pronounced Michael), has more going on than I wish. While she does have pachygyria, she also has CP, microcephaly, was premature, is anemic, has a feeding tube, and is non-verbal. I'm sure there is something that I forgot, but keeping that much straight takes work some days. Most of these things are fairly straight forward and therefore "easy" to deal with. The pachygyria and microsephaly are the issues we have trouble with because, other than deffanitions, there's not a lot of info. I guess I didn't realize that pachygyria was considered a "rare" disease, I thought it was just something I had never heard of. What shocked me the most was that our family doctor had never heard of it, either. Mykel did have seisures, but she seemed to outgrow them around at 9 or 10 months old, after her heart surgery. the big problem we're having at this point is that her therapists are POSSITIVE that she'll talk at some point, and therefore don't want to approve an audio output device for her, but she gets so frustrated because she can't make herself understood, and it just breaks my heart. We are actually thinking about getting her one on our own, and just paying for it out-of-pocket. She starts school next month, as this is the only way she can keep her therapy's, but I don't want her to get to the point that she shuts down because she can't relay her needs to her teacher.I know this is a long rant, but finding a place with parents of other kids that are going through some of the same things that Myk is, I just can't help it. Does anyone know of other resources with more information on this?
    Anonymous 42,789 Replies Flag this Response
  • hi im new to this site i looking for info as my son has just been diagnosed with pachygyria.joshua is 27months old, he has had feeding probs from birth poor weight gain at mo he weighs 8.8kgs. he is not crawling or walking as he does not weight bear on his legs, he has hypotonia.it is a constant battle to feed him at most he would drink 9oz of high energy milk. we havnt been told much yet about his condition but only not to hope for too much. i would like to hear from anyone who can give me sum advice.
    ann mac 2 Replies
    • January 30, 2009
    • 08:26 PM
    • 0
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  • My daughter is five, and is developmentally delayed due to pachygyria. She is walking, but still working on talking. To the mom whose child isn't yet talking and the therapists don't want to use adaptive equipment: the current thinking is that giving the child ALL access to communication will facilitate eventual talking, eg. sign language, a Dynovox (or something like it), etc. Your daughter's frustration with not being able to communicate at all might lead to her withdrawing...Just a thought. Hi, everyone. Thea
    Anonymous 42,789 Replies Flag this Response
  • I don't know if they can help any of you but I know they can work miracles, please check out Oklahaven: www.chiropractic4kids.com
    Anonymous 42,789 Replies Flag this Response
  • :)thank you for the info so far if anyone else has more info on what kind of future to expect from my son at present he is on sedatives to sleep it helps but i find him very drowsy and when sitting he tends to lose his balance and fall over he gets very aggitated aswell he is making sum progress but at a very slow pace is there any known treatment available.:confused:
    ann mac 2 Replies Flag this Response
  • HI....Everyone...I have a child we received at 7weeks old from a relative, for 18 years we have raised and loved her as our own...when we first got her, she was not cared for and she was a difficult baby: crying through the night, trouble eating, crossed eyes...we had no clue something phyiscal could have been wrong till we seen that she was not talking as she should at age 3...At 1 1/2 we had her eyes corrected and all was well...but at Preschool age she wasstill not talking at all....We had some tests ran and the doctors informed us that she had the brain contion of Pachygyria and was told she would not get better...We were heart broken but carried on and She was already spolied beyond belief and we continueed to spoil her rotton..lol That has hurt more than helped...but She is now 18 years old and does use some signing to speak and speaks some small words...she is happy and proud of herself, THAT means alot to us as a family. She dresses herslf, showers with supervision, she sociallizies way too much...and learns to prepare simple meals...her only curse in life is that she losses her temper quite quickly and and goes into these major rages and hurts people around her and walls, items and such, WE have not been able to curb this distructive behavior in her, medications does not help and reasoning does not help...Has anyone out there had this problem with their child? Is there anything I can do or try to get her not to react so harshly to disappointment and not getting her way? I know spoiling her did not help and now when she does not get her way she explodes into rages! Other than the anger issue she is doing great...Can anyone help us? Email any ideas to me at dsparrow@windstream.com Thank you all so much! darline
    Anonymous 42,789 Replies Flag this Response
  • My daughter, Allison is 2 and was diagnosed with pachygyria this past March. We knew something was wrong when she wasn't crawling or walking by her first birthday. She was 20 months when she started crawling and 22 months when she started walking, sort of walking. We've seen so many doctors and have had a lot of pt, ot, and speech. She's making some progress but as you know its going very slowly. I just want to know how you have coped with having a child with developmental delay. I still to this day feel as though I caused it. I don't know how but I feel like since she's my child, I must have done something wrong. Does anyone have suggestions? Where can I get literature? I'm desperate for a book about pachygyria. Thanks,BethBeth:My Daughter is 17 month old and she not crawling or walking yet... we were worried about her devlopement and had an MRI which came out with Pachygyria.We started PT and OT to her but somehow I'm so much worried about her, by looking at your post I felt it is some what same as my daughter, can you please provide me some tips of what to do inorder to encourage her .will be waiting for your reply.
    Anonymous 42,789 Replies
    • September 23, 2009
    • 03:00 PM
    • 0
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  • i have a seven year old daughter with patchygyra. when i took her to our gp at two years old and said i know there is somthing wrong with my child, fix her or fix me please, and practicly demanded help, he proceded to write me a script for anti-depresants for myself. i stood up and left. i went to a new gp i had never met before and told him the story, he refered her on to the right specialists no questions asked. after a few month of tests and scanns, when she was three years old, my partner (at the time) and i were told that she would likely never walk, talk, feed herself, or even sit herself upright. we were given the worst case senario. i looked at the specialist in complete shock and said have you ever even met my daughter, she hadnt. My Ciara (pronounced see-a-ra) was already walking and feeding well and had been for some time. she seemed a normal child apart from her speech and stature, she was tiny, and still is. Ciaras problems seemed to be based around her communication skills more than anything else. the doctor told me that this was proberbly as far as she would ever develop, and that her life expectancy wasnt good. after a breif mental breakdown on my part, i pulled my head in and decided NO! this will not stop my princess from having a normal productive life. so we have been having various therapies and treatments from that moment on. its alot of work but she is so worth it, we now have a relitively normal life she attends school 5 days a week, is still well behind her class mates but progressing none the less. i work part time and study part time, i have 2 other sons, the most beautiful generous children you could ever meet; true little gentlemen. there is sooooooo much love in our house i feel lucky to have this life, and my children. although Ciara has her moments and her frustrations will always be there she is the cutest little button, with the biggest heart and voice ( oh boy is she loud and she loves to sing the songs on the radio) So please dont give up, there is hope for patchy kids my Ciara is proof that with a whole heck of alot of work and alot of love its not impossible. GOOD LUCK! just remember they were made this way and sent to us for a reason, make the best of it...
    Anonymous 42,789 Replies
    • November 18, 2010
    • 06:14 AM
    • 0
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  • :eek: ive been looking for someone with the same disorder for 12 years to chit chat and compare. patchygyria is rare. im hoping to find someone here...Hi: It seems it's been a while since there's been conversation here. I hope this reinvigorates the discussion. My daughter Makenzie was diagnosed with Pachygyria 8 months ago when she was 6 months old (she is now 14 months). I am so frustrated about not being able to connect with other parents whose child has this disorder. I am thrilled to have found you all. Makenzie has daily seizures. They've reduced in duration and intensity with various medications. We are starting her on the ketogenic diet next Month. I was thrilled to read that another parent found this to be successful for them. Makenzie does not yet crawl, walk or talk. She is very motivated to move but hasn't been able to coordinate all the necessary moves. Her legs don't seem to be affected but she is extemely delayed with the use of her arms and hands. With therapy she now uses her arms whereas prior they'd hang at her side as if she didn't know they were there. Now she sucks her thumb and plays with her own hands. But does nothing else with them; she doesn't reach out to touch or grab anything. She was cortically blind for several months but miraculously her sight kicked in and seems to be seeing normally. She has many different sounds she makes but all with the back of her throat, no constant sounds like 'm' or 'b'. I feel very blessed that she chose me as her parent as she knows she will be loved and cared for. But I often feel isolated. Because she doesn't use her hands she can't do much of anything. She doesn't play with toys or other kids. I can get together with my other mom friends but it's not so much fun. Right now I'm struggling with how to fill our days. She has therapy every day and I do therapy with her at other times of the day, but I am at a loss for what else to do. I have discovered that she'll hold on the a shopping cart so I am now looking for places that use shopping carts (though that's not much fun for me as I don't like shopping). I'll stop now as I know I'm being long winded. I am just so happy to meet others in my position. I do hope to hear from ya'll! Kelly
    Makenzie 1 Replies Flag this Response
  • hi kellyMy son shayne is 21 this year and has pachygyria,he was simular to your little girl when he was little,you have a mountain in front of you in terms of what to do or try but just take it day by day or you will drive yourself mad,shayne didnt seem to know he had hands,and was very touch tactile,you could try and find out what she likes,does she like or respond to light touch? or hard? we are all tactile creatures i cant stand to be tickled and prefer a harder touch,our kids are just overly sensitive or under sensitive, so try hand massage a couple of times a day,water play,sand,shaving foam on a smooth table top is a good one,blow raspberries ino the palms of her hands,shayne used his feet to touch objects on the floor but his hands didnt really come into play for years ,he now has a large swoop kind of movement to pick things up,he has no fine moter skills so cant press buttons or point ect but it will take time whatever you do,shayne has a very high pain treshold so for him to feel any kind of contact it has to be much harder than you or i would need and loves to have really heavy objects on him,we have a weighted blanket which he loves,so try the massage thing and do her feet at the same time,maybe sing a rhyme that has hands and feet in it at the same time,but try and enjoy it for what it is and dont expect too much,but im sure you will see a change if you can first find out where she is the most touch sensitive.ive seen and tried lots of things over the years,some things you know are just not going to work straight away,but theres lots you can do,hope this helps ,if theres anything else you want to know from a older mum do let me know! keep smiling i do know how tough your job is kind regards cheryl
    cherylc 1 Replies Flag this Response
  • Hello, my daughter is 11 and she had a gran mal seizure at the age of 6 and after years of being told she was faking them, it was discovered that she had pachygyria. She has a lot of the symptoms that others have wrote about. The two that stick out the most are the rages and the pain tolerance. Other symptoms are quite different. My daughter has the seizures and she is mentally disabled, language for her is definitely an issue. Her IQ is 59.Her doctors at Kennedy Krieger only have one other case and do not know anything about anything I ask. I would love for this discussion to start again
    Lynnlg 1 Replies
    • February 14, 2013
    • 02:12 PM
    • 0
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  • I just wanted to inform all of you that might not know. There is a support group for pachygyria on facebook that is very useful in sharing imformation and getting help from other parents going through similar things. https://www.facebook.com/groups/Pachygyria/
    Roxanneserinity 1 Replies
    • December 12, 2013
    • 09:58 PM
    • 0
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  • I just wanted to inform all of you that there is a support group on facebook that is very useful for sharing information and getting help and support from other parents going through the same situations. It is called support group for phachygyria . It is very helpful and there is wonderful people in the group. please join !! http://forums.bettermedicine.com/showthread.php/17031-pachygyria/page2
    Roxanneserinity 1 Replies
    • December 12, 2013
    • 10:01 PM
    • 0
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  • Hello, my daughter is 11 and she had a gran mal seizure at the age of 6 and after years of being told she was faking them, it was discovered that she had pachygyria. She has a lot of the symptoms that others have wrote about. The two that stick out the most are the rages and the pain tolerance. Other symptoms are quite different. My daughter has the seizures and she is mentally disabled, language for her is definitely an issue. Her IQ is 59.Her doctors at Kennedy Krieger only have one other case and do not know anything about anything I ask. I would love for this discussion to start againhttps://www.facebook.com/groups/Pachygyria/ I suggest going here for help from other parents!! It is very helpful!
    Roxanneserinity 1 Replies
    • December 12, 2013
    • 10:04 PM
    • 0
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  • I believe I put the wrong link to the facebook support group here is the correct one! https://www.facebook.com/groups/Pachygyria/
    Roxanneserinity 1 Replies
    • December 12, 2013
    • 10:05 PM
    • 0
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