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mimi42 Message
13 May 2009, 05:22 PM

Hi, I am the grandmother of a very special little boy. He will be 2 years old this weekend and he still has not taken his first step alone or crawled yet. He has only said a few things, abba {which I prefer to think he is speaking of our heavenly father} and deedeedeedeedee. He is generally a very happy baby, he now has a sister who is 9 months old and has already passed him in things she can do. He has not had a seizure yet and the doctors seem to think that it will be inevitable that he does. I choose to think not. I need to talk to others who have dealt with this on a personal level instead of a doctors opinion. I do know that God created my little grandbaby and that he is perfect, I would just like to know if we are doing enough. we have pt, ot, and speech going for him at the moment. basically we, all of us would like to share experiences with others. God Bless you all.
mgarr Message
21 May 2009, 10:18 AM

mimi42 Message
21 May 2009, 12:39 PM

Hello, mgar. My grandbaby is not walking, but has no problem getting where he needs to go. he scoots around on his behind sitting straight up. he uses his feet and legs to help him scoot. he has never had a seizure. he has some fine motor skills delays, speech, and will likely have some cognitive delays. I am not going to limit him. I believe he can learn enough to be productive. its all in God's hands and i believe how much we are willing to work with him. i see him problem solve on a daily basis. he interacts with his sister as they babble to one another, and if she gets one of his toys he scoots right over to get it away from her. he knows what he likes and dislikes and gets frustrated when he cannot verbalize his frustration. he is so special to me and anyone that sees him. God has a plan for him and i know this so i am willing to patiently wait and see what is in store, i realize that it will just take him longer to learn things and that is ok. he gets occupational therapy, physical therapy, and speech therapy. he has been recieving ot for a year, pt and st for about half a year, once a week. they are amazed by his progress all the time. there is always hope! God is good all the time!!!
mgarr Message
22 May 2009, 05:22 PM

I am very glad to hear that your grandson can get past his limitations , now I realize that my girl's condition is more limited. It is good to confront each other which I have never done with someone with the same condition.God has a plan for us all thats what I tell her mother because she is very worried with her seizures and sometimes does not know what to do. She is trying every thing she can with her but still we see very little progress , still we do not give up! Her smile fills up my day ,thanks for sharing !
meemaw Message
18 Sep 2009, 05:19 PM

Hi all. My Grandson is 7 years old and has been diagnosed with pachy when he was 8 months old. He has some limitations, but they are his left arm and leg are a little slower and weaker, and he has been having speech therapy since he was a year old. He is in a life skills class, but takes music, art, and gym with his second grade level. He loves music, and he has a warped sense of humor. He also loves anything with wheels. I can actually picture him being a mechanic when he is older. He had only one seizure when he was 5, and took meds for two years after to prevent them, but has been free of them since. He is working on reading and writing like all other kids his age. When we first found out, I was terrified what his future had in store But he is just amazing, and loveable, and I wouldn't change one thing about him. He's a hard worker, and he is my hero.
mimi42 Message
18 Sep 2009, 06:22 PM

Hi! Meemaw!!! I would love to talk more with you!!!! My grandson will start PPCD next year when he is three years old. He has blessed my life since the day he arrived. I cannot imagine him being any only worry has been his future. Your story gives me much hope, I have never given up on the things he can do or will do.....I know that God has a bigger plan for his life as he has an innocence that others just dont possess. my personal email is feel free to email that account anytime and thanks again for your post...and God Bless You
dowling4 Message
20 Sep 2009, 11:09 PM

Our son is 8 yrs old and was diagnosed with pachygyria when he was 9 mos old. We found out something was wrong as he was having infantile spasms (type of seizure). Today he continues to have seizures but mostly they occur in the morning when he is in bed, and so aren't too disruptive to his life. Our son has delays mostly in speech, and he isn't able to say many words. However he is very able to communicate and understand everything that is said to him, and to get his point across. He goes to gr 3, and is in a classroom with peers for art, music, gym. He is in a separate room with several other students for the more intensive learning (math, science, etc), and 1 teacher teaches these kids according to curriculum. He started walking just before he was 3, and initially had to wear braces, but he no longer needs these. He can't run, but he can sure walk fast if he wants to! And he loves going swimming. He is an amazing boy and very happy and sociable. And he has continued to make progress right from the beginning. He most definitely is learning every day, but as we say...he learns in his own way and we need to adapt to that. We had him involved in an early intervention program with physio, speech therapy, and occupational therapy, and we think this made a huge difference for him. The earlier you can get your grandchild/child involved, the better it is for them.
mimi42 Message
21 Sep 2009, 12:40 AM

HI Dowling4! That is great!! my grandson, Mason makes great strides daily!!! He is an amazing child with a lot of hurdles to overcome, but with God's help and ours he will be all he is intended to be. I am a teacher (first grade) I do believe early intervention is key to development! he will get to come to ppcd at the school i teach in. it is a wonderful program. he already has pt,ot, and speech, that come to the house. he will be three in may. he scoots around to wherever he wants to go. he loves to swim, or should I say, he LOVES water, to be in the pool. i think it makes him feel free, uninhibited. i think God has a special plan for these little ones. they have a pure love, an innocence if you will. I will be praying for you and your little one. thank you..
dowling4 Message
21 Sep 2009, 07:22 PM

Hi mimi42, It sounds like your grandson will have a lot of support. He is lucky to have a grandmother who is also a teacher! I agree that God has a special plan for these little ones, and they truly do have a pure and innocent love. I know our son attracts others to himself for this reason. We have learned so much from him. I also agree that being in water makes them feel free. Thats probably why they love it so much. Thanks for you is nice to hear that Mason is doing well.
Barbiedoll Message
26 Jan 2010, 03:49 AM

It is nice to know there are others who have children or grandchildren with Pachygeria. There is so little information on this disorder other than technical medical info. My grandson Mason Ray is 1 year and 6 months old and is just getting to sit up alone. He has therapists provided by Early Intervention to help him to progress. It is a slow progression. He is reaching out for objects with better grasp and direction. Very happy baby and his smile and giggles warm your heart. I love him dearly. Unfortunately he is also deaf. He has been fitted with temp hearing aids hoping he could possibly hear something, but have not seen any reaction as of yet. He will be fitted with better ones soon and will probably increase the intensity, hoping he can hear anything at all. Fortunately, he has not had any seizures and pray he never does. If anyone has found any really helpful literature or websites on this disorder, I would be very appreciative. Hoping all who have to deal with this affliction are able to cope and that we can help our loved ones grow and live happy lives.
akovacs62 Message
26 Jan 2010, 04:23 PM

Barbiedoll Hi there, it sounds like my daughter is around the same age as your grandson. It does make you feel better to know that others understand what you are going through. My daughter is able to sit up independently, although some days if she extra tired, she still tips over. Shes finally reaching and playing with toys and is trying to crawl - she only makes it backwards a few feet. My daughter has had slow, but continuous progress. Our neurologist says that she should continue to develop, but will just have to wait and see how far she progresses. She continues to get stronger and her therapists seem to think that she may someday walk. My daughter has suffered from seizures since she was 2 months old and takes 3 seizure medications daily. Since she was about 14 months old, her seizures have been mostly under control, unless she gets sick or overly tired, then she seems to have a seizure here or there. Does your grandson have any siblings?? Do you know how much of his brain is affected by the pachygyria?? What type of information does the neurologist give you?? Sorry for all of the questions, but I've not had the opportunity to talk to someone with a child around the same age and with the same types of delays. If you'd like to email me, my address is Hope to hear from you. Amy
meemaw Message
22 Mar 2010, 04:55 PM It seems that there are many little ones with pachy who have speech issues, and hearing issues. Above is a link for American Sign Language, which is very helpful in teaching little ones that even if they can't talk, they can still communicate. Bradley struggled with speech, and once he learned a few signs, he quickly realized he could ask for a cookie, or a drink. Very shortly after, he noticed that words were quicker than signs. Signs are a great way to introduce an otherwise isolated child, to the concept that they can have a say in what is going on. That's a really big step towards independance, and a child's sense of self.
suzacrafts Message
10 Apr 2010, 01:37 AM

Hi All, I am delighted to finally converse with others who struggle with children who have pachy. Years ago when my daugher was diagnosed there was no such support. Although my daughter is now a 14 year old teenager I can relate to everythng I have read. It has certainly been an interesting journey. We had early intervention when she was 10mths. She sat up at alittle after 1 year and took her first step at a little after 3. She was not dignosed until 7 years when she had her first seizure (in her sleep). She is mainstreamed in school and is in a lifeskill program in Highschool. Going through puberty this year brought on Grand Mal seizures and different meds. She loves her stuffed animal and dinosaurs. She loves horses and is involved with the Pegasus program and best buddies at school. Her social skills are different and young and because of the different route information goes through the brain she is slow to respond sometimes getting frustrated and not responding. I would say her IQ is that of an 8 year old but she continues to progress academically. ( a good thing). We are closing in on the end of the public school sytem and plans for her future really make me worry. But we all know that we have been blessed with our children and their challenges (god new we could handle them) the life lessons are astounding. Patience, kindess, understanding and love are just a few... Kind regards to all..
akovacs62 Message
10 Apr 2010, 01:44 PM

Hi Suzacrafts It is so nice to hear how well your daughter is doing. I'm an anxious mom to an almost 2 year old with Pachygyria. My Olivia sits up and is trying to crawl - not quite there yet. She is also trying to pull herself to stand, but is still too wobbly. She has lots of problems using her arms and hands - she can't or won't hold her bottle by herself or self feed. She babbles like crazy, but other than hi or dada sometimes, hasn't really formed any words. And her hands are in her mouth constantly - our biggest challenge right now. Her vision is impaired, but improving and her attention span is pretty short, but also slowly improving. She still occasionally has a seizure if she gets too sleep deprived - even being on 3 seizure meds. I guess I wrote all of that to see if any of these sound like challenges your daughter has overcome. At this point its so difficult to imagine Olivia doing much more and learning things, although the docs keep encouraging us that she will. We work very hard with her and have lots of hope, but some days it gets so hard. Any insight would be appreciated. Thanks and god bless. Amy
suzacrafts Message
10 Apr 2010, 02:51 PM

Hi Amy, When Jamie was born she was extremely colicky to the point where I was brought to my knees in despair. Doctors never suggested we get her tested for anything. She was delayed with everything. We actually started using sign language when she was 3 to communicate. She did begin speaking around 4, walking at 3. I do remember her scooting on her butt before walking. I have another daughter who is 3 years older and she was inspirational for Jamie to get moving. Your daughter will walk an talk in her own time. Do you get services OT,PT, speach? It is very important to have all of that now. In hindsight I see that Jamie was having seizures all along. They were the space out seizures but in my ignorance had no idea what was happening until an obvious seizure occured and she finally had an MRI where they detected the Pachy. We had genetic testing done on her and it is noot genetic in our case. I remember having a virus around 10 weeks in to my pregnancy and I think that was it. It is astounding the odds of 1 in 4000 children are born with this anomoly . I so completely understand your fear, frustration and despair. Today at 14 Jamie cannot be left alone but is independent where she does many things on her own. I still wash her hair and wipe her butt and take care of some personal hygiene issues but that is getting better. Imagine dealing with the first Menstrual cycle! Goodness! She is a loving sociable girl but is isolated to some degree. Weight has become a problem as she is sedentry and has difficulty with sports other than swimming. Walking for a long time hurts her feet . She plays on the computer, loves movies and loves working with Horses. Her special Ed teacher e-mailed me the other saying she and another boy (handicapped) are fond of each other and are disrupting the class playing footsies. I was delighted to hear that. It means she is doing normal teenage things in her own way. I must say this is the first time in 14 years I have felt comradory and relief to meet others going through the same thing. I almost feel like I have paved the way (my daughter is older) and perhaps I can shed some light on those with younger children. I could go on and on.. I am honored to be amoung all of you sharing this life with our children. Hang in there... Sue
meemaw Message
11 Apr 2010, 07:20 PM

Hi all ! I am so glad to hear people posting on here again. My neice has a daugher who also has space out seizures, and I believe she will be getting an mri soon to check for any brain malformations. I am seeing that in our family, we have homocysteine issues, and I have 2 sisters who take b vites and folic acid to prevent early heart attacks and strokes. I have one sister who had a fatal heart attack to 42, my mom, her mother, and sister all had strokes in their 40's. Another neice has a homocysteine issue which she medicates. One side effect of these homocysteine issues is giving birth to a child with neural tube defects, which is what pachy is (neural tube defect). I am not positive, but I think for my family, this may play a big part. My grandson, Bradley is doing great, despite his pachy. Last week he learned to pedal his bike. Granted, it still has training wheels on it, but once he gets good at pedaling, he can start working on balance. I am so excited for him ! He's progressing pretty well. He's, back to playing baseball again for the summer. I can't wait to go see more of his games !
off2cthwzrd Message
9 Nov 2010, 06:00 PM

I'm literally in tears reading this page. I have been searching for years for parents of a child with Pachygyria. My daughter is now 5 years old and she was diagnosed when she was 15 months or so. She didn't crawl until 19 months and didn't walk until 22 months. She has had PT, OT and speech weekly for the past 3 years and it has really paid off!! She continues to amaze me with the progress she makes. I have a question for everyone...are your children potty trained?? My daughter shows no interest and we aren't sure if its part of her developmental delay or if she just doesn't have the sensation to urinate or have a BM. Thanks so much for your response! Beth
meemaw Message
10 Nov 2010, 01:44 AM

Hi Off2cthe wizard ! Don't give up hope. I think Bradley was 4 when he was potty trained. It just seemed like he wasn't worried about it. I believe they had to resort to rewards and time outs to motivate him. He was too focused on playing. Is she able to tell you when she had an accident ?
off2cthwzrd Message
12 Nov 2010, 09:31 PM

Thanks for your reply!! She is only able to tell us if she's had a BM. I really wish I knew if she could feel it or not. For now, we still talk to her all the time about going potty and she just pretends like she doesn't care. She knows what to do but she just doesn't do it.
meemaw Message
15 Nov 2010, 01:28 AM

Hi. Does she seem to grasp the concept of shame or embarassment ? I don't like to promote shaming, but sometimes that is a motivator. If you can get the point across to her that other 5 yer olds aren't doing that, you may be ahead of the game. Please keep in contact. I check my emails all the time. My daughter is on this site, and her son is the one with pachy. I'll Facebook her and see if she can respond.
suzacrafts Message
15 Nov 2010, 01:40 AM

Hi, My daughter is 15 years old and I still have to help her with #2. It is part of her developmental delay but she will figure it out. I'm happy to connect with another Mom with a daughter diagnosed with Pachy. Please keep in touch.
off2cthwzrd Message
15 Nov 2010, 03:07 AM

She doesn't get the concept of shame or embarrassment. She'll tell me that she's had a BM but never that she's wet. I just had a baby (4 months old now) and we were hoping that if she saw that the baby needed diapers that maybe she'd want to wear "big girl panties". No such luck. I'm so frustrated with it because I take her in the bathroom with me and she knows what to do, she just won't do it. She hates sitting on the potty. I've tried potty seats, cusions, you name it...I've tried it.
summerallyear Message
15 Nov 2010, 04:19 AM

Hello, friend, Off2cthwzrd! My name is Briana, and Mee Maw is actually my mom. My son is Bradley, and he has pachygyria. He is now eight years old, and potty-training was a nightmare. And we still have our moments. Now Bradley has apraxia of speech, and was diagnosed with and is treated for epilepsy, but he's a very "normal" kid when it comes to activities. He LOOOOVES and lives for sports! He gets his wants and needs across, although sometimes it's hard to understand, and he can now ride bike on his own without training wheels. And to think he just learned to PEDAL a bike this summer... (most kids learn the concept of pedaling by about what? Two?) So I was amazed. He's in the Life Skills classroom at his school, but he is in regular education classes with his specials, such as art, gym, music, library, and homeroom. He's doing GREAT in school. He takes care of himself for the most part, when it comes to getting dressed, and he can get his coat and backpack on by himself, and he has a great memory. He even knows almost all of the NFL football teams by their logo. So he's pretty average in some areas. But I wanted to let you know about the potty training. Although he can do many things other kids can, HE WAS NOT COMPLETELY POTTY TRAINED UNTIL HE WAS FOUR AND A HALF YEARS OLD. Actually, almost five years old. And to this day I still have to help him wipe. But hey, I'm not going to complain about it much because it's so much nicer than having to change a diaper or pull up. Bradley still has accidents on occasion, and yes, it's a pain in the patootie, but at the same time, he has developed the concept of shame and embarrassment, which I don't think he grasped until he was five or so. Yes, his father and I used some rewards for him, and we put him in time-outs when he had an accident. Now the time-outs didn't start until after he showed some signs that he knew he had to go, for example, he would go in the potty by himself, and later not go to the bathroom. So we knew that because he was ABLE to feel he had to go, rewards just wasn't enough. And yes, I had him in the bathroom every half hour to an hour, depending on if he actually went the previous time we went into the bathroom or not. It's very difficult, but she will make it. She might still not be ready to though. There is another little boy in Bradley's school who is in first grade now, and is six years old and has pachygyria, and he still wears a pull up. He only knows when he has to pee. Apparently, in talking to his mom, his pachygyria is also diagnosed as having lissencephaly. Bradley wasn't diagnosed with this, and he would need further testing to prove or disprove it. I truly think it all depends on the severity of the condition, or the grade. I know a decent amount about the condition, but even I do not know how to classify each child. Bradley's pachygyria covers a good portion of the right side of his brain and a very small portion on the left side of his brain. He's developmentally delayed and has a very difficult time with reading and math, and he's at the age of a third grader. His math and reading skills have been on a kindergarten level for the last year and a half, but are slowly improving. Hey, at least he can write his first and last name now, and can verbally identify most letters of the alphabet. He did not take steps until he was 22 months old and didn't even learn to crawl until his third birthday. Keep your chin up, friend! Be strong! Your new baby might be a big help. Bradley has a little sister named Kacey, and I potty-trained them both at the same time. She was two and he was almost five. I'm sure your daughter is probably not ready because she has been focusing on feating other daily tasks for so long, and is slowly trying to catch up. She was behind on walking and crawling, so I'd definitely give her plenty of time to learn and catch up. Things will all work out. I will pray for patience and strength for you and your family, and for God to help her communicate better to you, her pottying needs.
msmaniac Message
21 Nov 2010, 09:52 PM

Hi everyone, I am soooo glad I stumbled upon this page. It's sooo reassuring to know me and my mum arent the only ones going through raising a child/teenager with Pachygyria. My sister is 15 going on 16 and shes had Pachy frm when she was a baby.. My mum is incredibily strong for raising me and my lil sis on her own and still continues to have a life. However, it's incredibily hard seeing my sister be up and down with her condition, but she manages sooooo well with it and just gets on with it. Although me and my sister are only 8yrs apart I feel like a parent to her, and I am incredibily emotional right now cos I just found out that Pachy suffers sometimes dont live past the age of 20 which is heart breaking... Me and my mum are determined to ensure that my sister has the best life possible and in most ways shes done more things than I have... I can soooo relate to all ur stories, as my sis enjoys swimming, she cannot verbally use her words however she is able to communicate and understands most if not everything u tell her... The only advise I can give u all is to prepare for when ur child hits puberty/adolescent ages cos it DOES get harder... Ensure ur support system is tough, and dont give ur child any limitations cos SKY'S THE LIMIT x
meemaw Message
22 Nov 2010, 01:59 PM

Hi MSManiac. There are a few types of pachygyria. I believe pachy with lyssencephaly is the level with the most involvement. Before you go worrying about that, find out which level your sister has for sure. I know years ago i'd panic, because I looked online, and everything threw me into lyssencaphaly, which can have affected lifespan. I'll try to find a link to send you on it. Here is the link.
off2cthwzrd Message
10 Mar 2011, 04:12 AM

First of all let me say I'm soooo sorry it has taken me so long to reply to all the wonderful responses I got about my daughter not being potty trained. It really helps to know that she isn't the only one. Just as an update, we are taking her to a urologist in April. The first appt. is just to talk about what's going on and discuss any testing that may be necessary. I'll keep you posted. Thank you for the prayers. I sure could use some help with patience these days.
fee2010 Message
4 May 2011, 02:11 PM

Reading all of this has brought me to tears. but reading personal experiences will be such a help to me given searching for general information on the web has been confusing and complicated to know what lies ahead. my daughter was diagnosed last month with pachygyria so stil very early in having to come to terms with it all and finding out information. she is only 6months old. it was discovered as she started fitting and took a month to be allowed back home with what they deem to be managable fits. she currently has roughly 3 a day even with 4 doses of oral anti-fitting drugs.i just wondered if any of you could suggest useful questions that her dad and i could ask her doctors as whenever asked our minds always go blank. hoping that you can give any suggestions that you found helpful to be told about
John1217 Message
7 Jun 2011, 02:44 AM

Hi Everyone! My son John is 4 yrs. old now. His diagnosis was when he was 2 yrs. old. We are not successful with the potty training yet. But he knows the word "poopy" He has OT and Speech Therapy, along with Communication Therapy. We have tried sign also. As for the potty training. We have been told that this also comes with the rest of the delays. Hang in there, it may happen.
off2cthwzrd Message
7 Jun 2011, 03:01 AM

Just for an update...we saw a Urologist and she ordered an ultrasound and x-ray of my daughter's kidneys and bladder to make sure there wasn't anything wrong that may be causing her to not feel when she has to urinate. Those tests were normal!! :o) She also referred us to a Gastroenterologist which we are seeing tomorrow so we can get some help with her bowels. She is still in diapers, still has no interest whatsoever in using the toilet. She'll be going into Kindergarten in the fall and I'm just so scared for her that she'll be made fun of at that age. Please keep the prayers coming that the doctors will be able to figure it out and she'll be out of diapers soon. I'll continue to pray for all of you as well. Just out of curiosity, does anyone know what causes Pachygyria? All I know is it happens during the first trimester.
summerallyear Message
7 Jun 2011, 12:11 PM

I've often wondered what causes pachygyria as well, but the only answer I got was that "it just happens" and was probably around 12 weeks gestation. That is all I have been told, and can't find many answers either.
meemaw Message
8 Jun 2011, 03:01 PM

Pachygyria is a neural tube defect. One of the causes of Neural tube defects are abnormal homocysteine levels in the mother during pregnancy. My family history is this-maternal grandmother had a stroke in her 40's. 2 of her daughters (my mom and her sister) had strokes in their 40's. My sister had a fatal heart attack at age 42. 2 of my other sisters have abnormal homocysteine levels, and treat it with b complex vites and folic acid, I believe. My sister who died of a heart attack's oldest daughter has MTHFR, which is a genetic thing with abnormal homocysteine levels. The website below gives some pretty good information. I know they found this mutation by doing a genetic test, so it is likely that my 2 sisters have the mutation(s) (there are 2) as well. It's probably a good idea to get tested. One of my sister's with homocysteine issues grand daughter had a stroke some time between birth and 3 years old, and yes, it has been found that she also has the MTFR mutation. I'm sure there are other causes, but my family history has been riddled with homocysteine issues. If you have the opportunioty to get checked, you can either have the genetic test for the MTHFR, or a homocysteine challenge to check your levels.