Dear all, Two weeks ago our six week old daughter was diagnosed with DCS. Initially we went to see a pediatrician for feeding problems and a weak cry. The pediatrician examined her and noticed a weak torso and neck. Shortly thereafter an MRI showed a double cortex. Does anyone recall/recognize beforementioned symptons from your children's babyhood? Thanks for your response. Angela (a_rapisarda@hotmail.com)

Our daughter Chloe (now 20 months old) had similar symptoms prior to being diagnosed. In addition to feeding problems (later diagnosed as delayed gastric emptying) we noticed that at 4 months she still was not meeting most of her developmental milestones -- she wasn't attempting to roll over, was not using her arms, and had a difficult time keeping her head up when she was on her stomach. We had her evaluated by the county and she was diagnosed with Global Developmental Delay and Hypotonia. They recommended we take her to a neurologist and physical therapy. Her development improved after we started the physical therapy but the neurologist ordered an MRI/CT Scan to try to determine the root cause of the developmental delay and hypotonia. The MRI revealed the Subcortical Band Heterotopia. Happy to answer any additional questions you might have.

Hi everyone.we are a comunity of parents with double cortex syndrome on facebook.I think it would be useful for you to join us and exchange information about our children.

Thank you for your responses. We will surely join the community on Facebook! Vgiglotti, can you please elaborate on the feeding problems and hypotonia with your little girl? How's Chloe developing? Angela

Angela, essentially Chloe would just take an extremely long time to drink her bottle and would frequently vomit her entire feeding. From what I understand the food would basically just sit in her stomach instead of "emptying" like it was supposed to, hence the "delayed gastric emptying" diagnosis later on. As far as the hypotonia, she never really would use her arms or try to raise her head during tummy time. Her legs, would get very rigid when we tried to stand her yet at the same time she was extremely "floppy". She is now 20 months old. Her development is still very much behind that of a "normal" 20 month old but she is making progress thanks to a lot of hard work. We have her in physical and cognitive therapy and my wife works with her every day to help her achieve developmental milestones. Little things like holding her own bottle, bringing objects to her mouth, and crawling did not come easily or naturally. She essentially has to be taught everything but she is making progress. We're hopeful that she'll be walking soon. -Vince

Hi Vince, Thanks again for your response. Good to hear Chloe is progressing slowly but surely. Our daughter is also extremely floppy, mainly head and shoulders. Feeding her takes a lot of time. She needs seven times 2.8 oz a day. Sometimes she'll finish her bottle in fifteen minutes, sometimes it takes up to an hour or she won't even finish half of it, which gives a lot of stress. Yesterday we had a stomach feed tube installed at the hospital to give us all some relief. Next Friday a speech therapist specialized in feeding problems will come and see us and hopefully will have some pointers how we can improve the situation. When and how did Chloe's feeding improve? What kind of cognitive therapy was and still is given to Chloe? How's Chloe dealing with the hypotonia? Is she tired more quickly due to it then other kids her age? Does she still have a difficult time keeping her head up? We are very afraid for possible seizures and the damage they could cause and are having an extremely difficult time accepting the whole situation. How are you dealing with this ordeal? Apologies for the flood of questions, but we're happy to learn about your experiences given the improvement your little girl is making. Angela

Angela, Chloe's feeding problems improved once she started with solid foods. We had to work with her to get her to bring food to her mouth and hold her bottle but now she feeds herself and drinks from a bottle and sippy cup with no problems. For the first few months she did sleep a lot. She seems to have "outgrown" that as well. In fact she tends to take "cat naps" a lot of times rather than her full 2 hour nap. She also no longer has any problem keeping her head up. Seizures are our biggest fear at this point. Fortunately she has not yet had any but we dread the day when they start. As far as dealing with the situation, the key is to take things one day at a time. When I think about the big picture and what the future may hold it can be overwhelming. It's better to focus on the positives and the things that we actually have some control over. We love her so much and could never imagine our lives without her. She is just the sweetest little girl.

Angela, my daughter has 7 years old.so far no seizures thanks God. I understand your fears but I wanna tell you that everything will be fine.will be better for you if you enter in our comunity on facebook and talk with us.here we speak everyday about our children and their progress.also my daughter has a delay in speaking ( she is developed as a 4 -5 years old ) but during the time I hope everything will be fine.there are children who develop seizures and children who doesnt.as doctors still dont know too many about DCS our hope is to God help us. Here is the link on facebook. Come join us. http://www.facebook.com/home.php?#!/group.php?gid=202874095437

Thank you Vince for your messages. I joined the facebook group. Hope to speak to you there.