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Post by Christine on Jul 28, 2016 14:56:44 GMT
Hi my 6 month old boy was just diagnosed with Lissencephaly. We noticed infantile spasms at around 4 months but no one knew what they were and they didn't happen very often. The frequency of the spasms started increasing and we became worried. At 6 months we saw pediatric neurologist who gave us our diagnosis of LIS/pachygyria. I wish we had more support here. It is such a rare condition I don't know where to reach out. If anyone can tell me how their kids are doing I would appreciate it. I know the prognosis is pretty grim. My son was not meeting his developmental milestones, and we thought it was because we were doing something wrong. He cannot roll, reach, or sit. I thought I just held him too much because he is my first baby. He would just lay there during tummy time. He doesn't track with his eyes very well. He is a great eater and loves boobs and bananas. Please share with me your experience and how your child/ren are now. If there are any more support groups we can be a part of, let me know. We are so sad yet determined to be the best parents our little angel deserves. Thank you Christine Loma Linda , CA
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