Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Hi , Thank you so much for replying to me. Aislinn hasn't started seizures yet. I don't even know what kind of polymicrogyria she has that was never revealed either. I will consider sending her scans to Dr. Dobyn's I need to get a copy of her scans to do that. She was getting delayed in her gross motor skills but as soon as we had the MRI done she started sitting up then pulling up to stand just a few days later. I will pray for your daughter. Aislinn is 8 months old but her communication is on a 3 month old level. She doesn't say mama or dada so that is how they came up with that. Does Sophia have any other problems other than polymicrogyria? Not to be nosey I'm just curious to know if there is other things associated with her condition like it is with Aislinn's situation. Please take care and also let us know how Sophia is doing. Mika and Aislinn lauranotdigangi wrote: Hi Mika. I'm sure you will get a lot of different answers to your question when you read old messages. My daughter Sophia is 2 years old, has had seizures since two weeks old that have been well controlled with meds, usually two at a time. Most of her skills are in the 1 year old range, except her gross motor skillswich are are more like 6-8 months But just this week she started crawling!!! woohoo!! Anyway, she has left sided polymicrogyria, therefore her right side is weak and that's why we have gross and fine motor problems. She also has low muscle tone, and trouble eating solid foods. We have four therapies a week, and are adding in speech to bring it to five. We're a busy group over here! I have NO clue what the other things are that Aislinn has been diagnosed with. I would continue your research, be as informed as you can, and push your doctor for a real explanation. Other than that though, no one can predict your daughter's future. When Sophia was diagnosed, we were under the impression she would not live this long and would never progress beyond the skills of an infant. Didn't work out that way at all. Keep learning, keep hoping, and do everything you can to develop her body, mind and senses. And keep us informed of how you're both doing, of course! Oh yeah - and consider sending your MRI in to Dr. Dobyns at the University of Chicago for a free reading and analysis. Maybe he can give you more answers about the future. We just sent ours in last week, but there is a 6-8 month wait for results. and Sophia > > Hi, > > Can anyone tell me from their experience what does polymicrogyria do to a child. My daughter who is 8 months old has been diagnosed with polymicrogyria, mega cisterna magna, band heterotopia, subependymal heterotopia, and atrphic corpus colossum and vermis. Her neurologist never would explain to us what any of it meant other than she will have epileptic seizures and after trying to research all of this i find that there is more to it than just that. If anyone can tell me anything on polymicrogyria it would be greatly appreciated. > > Thank you, > > Mika > Aislinn's mom > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Hi , Aislinn also has hypertonia in her legs although it doesn't seem to be bothering her it is difficult for her to try to stand but she isnt letting it slow her down any what so ever so she is blessed in that respect. I'm trying to get her some speech therapy at the moment even though she is still young I just want to try to get her as caught up as possilbe. Being able to talk to other parents with children with polymicrogyria has helped me so much to be able to figure out what questions to ask the doctor when I go back, I just hope the doctor is ready to answer them instead of tell me not to worry about it. From the way it looked on her MRI her polymicrogyria is on both sides of her brain but just in the parietal lobe of her brain. The other thing that has got me curious is the atrphic corpus collosum I wonder if anyone else has this with polymicrogyria everytime I look it up it talks about autism which she is also delayed in her cognitive, communication, social and emotional skills but her doctor doesnt even want to consider it at this point because of her age. she is only 8 months old by the way. Please keep me informed on Evan and his progress. Mika and Aislinn gabeandevansmom wrote: Hi Mika, It sounds like your daughter is doing well if she is crawling and pulling to stand that is great. My son Evan is 20 months old and started crawling at 15 months and is now pulling to stand. He has bilateral perisylvan polymicrogyria, cerebral palsy but he like your daughter has a risk for seizures but not had any yet (thank God) He is delayed in his motor skills and speech and we are also having feeding issues such as high tone in his tounge, he does not chew. His condition although it is bilateral affects his left side. I think it depends on her other conditions and what type of PMG she has. I would concur with the advice of the other mom, just do a lot of research and the next time you see your neurologist have a list of questions and do not let him leave until you get them answered or at least a resource that you can turn to. The internet is great but it always gives you the worst case scenario and it is sometimes hard to differentiate between what your child is currently exhibiting and what could happen. Hope this helps Mom2 Evan 20 months BPP, Spastic Hemiplegia CP and 5 nda, 14 nda. > > Hi, > > Can anyone tell me from their experience what does polymicrogyria do to a child. My daughter who is 8 months old has been diagnosed with polymicrogyria, mega cisterna magna, band heterotopia, subependymal heterotopia, and atrphic corpus colossum and vermis. Her neurologist never would explain to us what any of it meant other than she will have epileptic seizures and after trying to research all of this i find that there is more to it than just that. If anyone can tell me anything on polymicrogyria it would be greatly appreciated. > > Thank you, > > Mika > Aislinn's mom > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Hi , Can you tell me what prompted you to have Evan checked? Was he delayed in some of the same things as Aislinn is? She crawls finally, and sits up although she is very shaky but she is sitting. And when she stands she is very shaky but she is doing it. She still falls from time to time but she gets up and keeps going. The major thing I see she is delayed in is speech. When I try to get her to say something she smacks her lips like she would be blowing kisses or she will spit. The physical therapy people are coming thurs. to see once again if she qualifies which will be the 4th time they come to see this I wish they would either take her or let me find someone else who will. Take care and keep me informed on Evan's progress. Mika and Aislinn gabeandevansmom wrote: Hi Mika, I think you should try to get her whatever services she qualifies for. Evan was just over a year when he started speech but we did not get diagnosed until he was 9 months and did not get services started until he was closer to 10 months. Isn't it great when you see how determined you child is? Evan is really a miracle for us because our neurologist said that if he saw t Evan's MRI before he had seen Evan he would have eexpected to see a severly mentally retarded child with a shortened life span. So for Evan to be crawling and pulling to stand and be as far in his cognitive development as he is I am just so grateful and I am a firm believer in letting the child tell me what he/she will or will not be able to do. I think talking to other parents who " get it " is the best thing you can do, it is something that has really helped me out a lot > > > > Hi, > > > > Can anyone tell me from their experience what does > polymicrogyria do to a child. My daughter who is 8 months old has > been diagnosed with polymicrogyria, mega cisterna magna, band > heterotopia, subependymal heterotopia, and atrphic corpus colossum > and vermis. Her neurologist never would explain to us what any of > it meant other than she will have epileptic seizures and after > trying to research all of this i find that there is more to it than > just that. If anyone can tell me anything on polymicrogyria it > would be greatly appreciated. > > > > Thank you, > > > > Mika > > Aislinn's mom > > > > > > --------------------------------- > > New Yahoo! Messenger with Voice. Call regular phones from your PC > and save big. > > > > Quote Link to comment Share on other sites More sharing options...
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