Hi everyone, I am new to this group and my daughter was just diagnosed. I am anxious to conect with other parents and talk. Madison is 2 and a wonderful happy, spoiled, charming girl. I am just trying to compare I guess...She isn't talking at all. She is signing a bit and totally knows how to get her point across, but I am wondering if there were other late talkers? She makes sounds, like she moooo's like a cow and makes car sounds etc...Also, she is very delayed in gross motor skills. She isn't walking yet. I am sure she will, but again just trying to compare and see when the other kiddo's started walking. She crawls everywhere and climbs everything, but just hasn't wanted to be upright at all until very recently. Now she wants to, but she is afraid. She had her first siezure at the begining of June and hasn't had another one. They put her on Trileptal twice a day and she does really well on it. They say she will have more, so I guess we just wait and see. I am very frusterated by the lack of information available. I am sure the rest of you are too. Now for my favorite...are the kids potty trained? Was it hard? Any tips or tricks would be great. We haven't even attempted anything yet, mostly cause communication can be chanllenging. I think a lot of the kids I have been able to find or read anything about are quite a bit older than Madi. Anyway, enough about Madi....I am Madison's mom and my name is Kara. I am married to a wonderful man and his name is Brock. I have another child from a previous relationship and he is 12 going on 25. His name is Joey, well now that he thinks he is 25 he prefers to be called Joe, but I don't. :) Anyway, looking forward to chatting with anyone. I posted links to Facebook and Myspace if anyone is on there. Thanks

Hi Kara It's good to hear from you. My names Jaya and I'm mother to Kareena who is four years old and has DCS. Your the first person I've heard from who's circumstances are very similar to mine. Kareena also has no speech and can only make sounds. She seems to be trying to speak now but still can't say any real words. She too learnt to walk late (around 2 years) but actually learnt to crawl even later than that! She too is quite delayed in her Motor skills but has made a lot of progress. She had her first seizure around 3 1/2 years old but only has them around every 2 months so we haven't been giving her any medication. Kareena's a very happy social child but finds it difficult to play with her peers. She prefers the company of older children who can lead her to games. Kareena's not potty trained although she does use the toilet during the day (she points to the toilet when she needs to go) but she wears a nappy at night. Not sure how to tackle thsi one. You should get Madison to use the toilet or potty regulalry, then she'll eventually prefer to use it rather than her nappy during the daytime at least. Nice to hear from you. Speak soon. Jaya

Hi Jaya and all, Thanks so much for the post. I have also been getting e-mails and updates from other in the group. Thank goodness for this group! Does Kareena use sign language? Madi is picking that up really well. She uses sign language to say please, more, all done, dog, cat, I don't know, milk...and probably a couple more i just can't think of right now. She has been in speach for close to a year and nothing was working. Then I stumbled upon DVD's called signing time. There are 13 of them and once she started watching these DVD's in the morning, she picked it right up. Now I working on getting the whole set, as right now we only have the first one. I also bought a Sign Language book and practically carry it around in case she wants to know how to sign something new. She still hasn't had another siezure so we have hit 5 weeks without one. She still isn't walking, but yesterday she let me only hold one hand instead of two and she took about 3 steps like that....closer all the time. What do you do when she is being naughty? Madi is totally two and pushing buttons big time. Fits on the floor and hitting and she bangs her head sometimes just because she knows I don't like it. I am finding it difficult to find an appropriate response to these issues. Oh and she only does this stuff with me. She is an angel with everyone else. Hugs to all, Kara

Hi Kara It's so good to hear from someone who child is similar to mine. Kareena knows a few signs but is very reluctant to use them unless prompted. She won't sign to tell me what she wants. She'll only sign after I tell her to. But to be honest I don't think I make as much effort with teaching her to sign as you do. I just keep hoping she'll talk soon so won't need the signing. She'll be starting in a Special needs school in September which is great as they have a Speech and Lang therapist on site so I'm hoping she'll make more progress. With regards to Kareena's physical progress, she's done things very strangely, as she learnt to walk before she could crawl. She couldn't even stand up from sitting but she could walk! She's 4 years old now but can't really jump or run normally. SHe looks very odd when she's trying to run with other children. Kareena doesn't really have tantrums or other behaviour issues....yet. I don't think she'd know how to have a tantrum! She'll just cry if she's upset but it's quite easy to distract her and make her forget. She's been assessed and has been put at around 2 years old in abilty but even further behind with her speech. Kind regards Jaya

Hello Everyone, My name is Katrina and I am from Missouri, USA. My husband is Joey and we have a daughter Jaiden who is 5 yrs old. She was diagnosed with double cortex syndrome at 3 1/2. We have one other daughter, Makaylee, who is 6 1/2. Jaiden will start Kindergarten in 2 weeks and is very excited. She has attended a great special ed pre-school through the public school system and received speech and occupational therapy. Jaiden was born with crossed-eyes. After 2 unsuccessful eye muscle surgeries and milestones not being met, our pediatrician and opthamologist decided a brain mri was in order. This is when the band heterotopia was detected. She was then tested for the double cortex mutation and it was then diagnosed. Since this is genetic we had her sister tested to see if she would be a carrier. She is thankfully not. Does anyone have a family history of this out of curiosity? Jaiden now wears glasses to correct her eye alignment. Anyone have issues with vision or crossed-eyes? Jaiden did not walk til 21mos. She is talking very well (that would be her strongest area). She starts around 6am and doens't stop:) She is behind though in all areas--especially gross and fine motor skills. She is not potty-trained yet. She will go if you take her, but will not tell us when she needs to go, even though she has the language skills. We have been coping with many urinary tract infections due to holding it and only going a little bit and having to wear a pull-up 24/7. She could care less if she is wet. We have tried just putting her in underwear and she still doesn't care if those are dirty. This has so far been our biggest struggle. We have faith though that some day she WILL accomplish this:) Also, she has issues with fear and anxiety. She is scared of almost anything--getting a haircut, simple kiddie rides, car washes, and of course the doctor. She is on a very low dose of Risperidal to help with this. We don't like that she is on it, but it does help and makes our home a lot happier. She has only had one seizure, 1 month ago, that we know of. So far no meds for this. It is so nice that we have been referred to this site. I'll be looking forward to talking with everyone. Have a great week. Katrina

Another question...My daughter is having a really hard time in Physical Therapy right now. I don't mean, physically hard, I mean refusing to participate. Crying, hitting, laying on the ground....Historically she has been wonderful in PT and remains wonderful everywhere else. It's like she made the determination that she doesn't like it and therefore is not doing it. I am sure that some of it is just do to her age, but does anyone have any advise? Seriously the last several appointments, I have left in tears because it's horrible. Horrible to hear, horrible that she won't stop, and horrible because if she put that kind of energy into trying she would already be running around. Let me know what you think!

My daughter is 13 yrs old and was diagnosed when she was 16months old after having her first KNOWN seizure. Looking back I think she was having them around 9 months but since they weren't convulsive .. we didn't recognize them. When she was younger she experienced ALOT of the same "meltdowns" you mentioned. She had NO meds from age 3 until 6 and NO seizures from age 18m until 6 when she had a grand-mal. Ironically after that grand mal is when she started TALKING and READING at an alarming rate :) :) Things are NOT always horrible. She has her MOMENTS and with puberty the seizures and mood swings have Increased. She was on just Trileptal from age 6 until 12 with very lil seizure activity those 6 years. She is reading at a 4th grade/5th g rade level..however comprehension of what she reads is lower. Her social skills are probably the most delayed but she TRIES so hard to fit in with her sister and peers. She is very active in Special Olympics and buddy sports. At times I feel like I have a 6yr old going through puberty instead of a teenager. I wouldn't trade her for the world. It takes ALOT of patience EVERY single day. There are so many I have heard from that say their child with Double Cortex cant walk, cant talk, has several seizures a day etc.... so I feel blessed that she is doing so well. Diet is a key factor ... when we get busy and eat out alot HELL breaks loose... so its best to have well balanced diet and STRUCTURE in the home.

Hi, I just read your post allforchildsplay. Are you part of the group we have on Facebook? If not, let me know and I'll send you the link where you can be added. It's a private group. My daughter is 12 and recently got her first menstral. I've found an increase in seizures since then. Prior to that, my daughter was diagnosed with DCS when she was 2, which was a little after her first seizure. Or at least her first documented seizure. When she was around 9 years old, she started having convulsions and drop seizures. She began wearing a helmet to protect her head from damage. Two years ago she had brain surgery to help stop the drop seizures. It has worked, Thank God. She still has convulsions and "head drops" though. Meds don't seem to work for her. Let me know if you wish to join the group on Facebook. Many families are there and we have become a close knit family. We'd love to have you!

My name is Morgen and my 11 year old daughter was recently diagnosed with DCS/SBH. There doesn't seem to be much information available about we as parents can expect as we move forward with this diagnosis. Is the Facebook group still active and is it "bad form" for me to invite myself? ;-) morgenflynn@gmail.com