Post by daniellenycole07 on Apr 23, 2012 5:28:56 GMT
Hi, I am so glad that I found this forum, I have read some of the stories already and will be reading more, you have all touched my heart and helped me just knowing that I have finally found others that have gone through or are going through what we are. I would love to hear more of your stories, advice, information, techniques, anything that could help us. If anyone is willing to, please reply here or email me at geminilove913@yahoo.com I would greatly appreciate it and love to hear from you. Here is a little of our story.
I have a beautiful 22 month old little girl named Layla Grace that has been diagnosed with Lissencephaly. We have not yet been able to get in to see a doctor that can really give us much insight on this or have all the testing needed done. The whole diagnosis process was actually a complete mess. We were told completely wrong by the neurologists when going over her MRI results, he had lead us to believe she had Cerebral Palsy and her brain was minorly affected in the back. He gave us no good explanation. About 5 months later we finally got in to for the Video EEG for seizures, we stayed for 4 days and we told she was having high brain activity in the part of her brain that could lead to seizures very frequently but did not actually capture any while we were there so we are still unsure if she is having them or not yet, though we think she may be having absent seizures. It was not until they had unhooked her from the machine and getting our discharge papers that they finally brought me a copy of her MRI and medical records I had been requesting for months. At that point my husband and I read the MRI and realized that it was not at all what we had been told. We had one of the attending doctors come in and explain it. At that point they were not aware that we had no clue of the real diagnosis or what it meant for our daughter, they did better explain what her brain looked like, the problems with it and told us to be prepared for seizures at anytime, gave us our discharge papers and sent us on our way. So here we are with a new diagnosis, an awful MRI, possible seizures, and absolutely no prognosis or explanation of this diagnosis. That night of course I could not rest, I sat on the computer looking up everything I could find on Lissencephaly and cried my eyes out as my whole heart fell right out of my chest, or at least it felt like it. Since then, I have explained what I can to our therapists, our pediatrician, and our family, but nobody else knows anything about it either. So here I am, hoping that you amazing people can help me a little bit more, anything you can tell me or even just sharing your stories with me, I'd be very thankful. And though I have been a little in the dark about Lissencephaly, I have been working with my daughter very much and if there is anything I may be able to share to help others I would love to do so. I feel like my daughter is already by far doing better than any other case or story I have found yet, which makes me very happy and thankful, but at the same time I can't help but to be scared as to what may happen or if it may all start going downhill one day. Does anyone else know of any mild cases of this, or minorly affected people with Liss? Is it possible? Or have we just gotten lucky so far? I hope to hear from anyone, everyone, someone....
I have a beautiful 22 month old little girl named Layla Grace that has been diagnosed with Lissencephaly. We have not yet been able to get in to see a doctor that can really give us much insight on this or have all the testing needed done. The whole diagnosis process was actually a complete mess. We were told completely wrong by the neurologists when going over her MRI results, he had lead us to believe she had Cerebral Palsy and her brain was minorly affected in the back. He gave us no good explanation. About 5 months later we finally got in to for the Video EEG for seizures, we stayed for 4 days and we told she was having high brain activity in the part of her brain that could lead to seizures very frequently but did not actually capture any while we were there so we are still unsure if she is having them or not yet, though we think she may be having absent seizures. It was not until they had unhooked her from the machine and getting our discharge papers that they finally brought me a copy of her MRI and medical records I had been requesting for months. At that point my husband and I read the MRI and realized that it was not at all what we had been told. We had one of the attending doctors come in and explain it. At that point they were not aware that we had no clue of the real diagnosis or what it meant for our daughter, they did better explain what her brain looked like, the problems with it and told us to be prepared for seizures at anytime, gave us our discharge papers and sent us on our way. So here we are with a new diagnosis, an awful MRI, possible seizures, and absolutely no prognosis or explanation of this diagnosis. That night of course I could not rest, I sat on the computer looking up everything I could find on Lissencephaly and cried my eyes out as my whole heart fell right out of my chest, or at least it felt like it. Since then, I have explained what I can to our therapists, our pediatrician, and our family, but nobody else knows anything about it either. So here I am, hoping that you amazing people can help me a little bit more, anything you can tell me or even just sharing your stories with me, I'd be very thankful. And though I have been a little in the dark about Lissencephaly, I have been working with my daughter very much and if there is anything I may be able to share to help others I would love to do so. I feel like my daughter is already by far doing better than any other case or story I have found yet, which makes me very happy and thankful, but at the same time I can't help but to be scared as to what may happen or if it may all start going downhill one day. Does anyone else know of any mild cases of this, or minorly affected people with Liss? Is it possible? Or have we just gotten lucky so far? I hope to hear from anyone, everyone, someone....