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Baby w/ pachy

samisaacson Message
2 Apr 2010, 08:04 PM

Hi! I am a new mother with a 2 month old son that has been diagnosed with Pachygyria! He has been having seizers since the moment he was born and we have been in and out of 2 different hospitals. I am not to sure what to expect, but so far he has been meeting all of his baby milestones and has perfect hearing and vision. Needing support, Thanks Sam
akovacs62 Message
10 Apr 2010, 01:32 PM

Hi Sam, My daughter, who is now 22 months old, started having seizures at 2 months old and wasn't diagnosed with Pachygyria until 1 year old. Her seizures were mostly under control by 1 year old. She did ok with her milestones until around 5 months old. But is now delayed. Her hearing is fine, but her vision is impaired, but improving. I hope your son continues to do well. It seems like the past two years have just been "wait and see how she does" - no one knows what to tell you what to expect, which is very frustrating. Good luck to you guys Amy
gillianharron1983 Message
9 Jan 2011, 03:13 PM

Sam, I'm wondering how your son is getting on now? Our son was diagnosed shortly after birth. He's now 10 months. He's siezure free and like your soon seems to have perfect hearing and vision. He's not yet able to sit unaided (throws himself back and doesn't find his centre) but he is very interested in his environment, reaching out for everything, passing objects between hands. He's happiest on his toes bouncing. I'm interested to know if other pachy babies reached the sitting milestone?
samisaacson Message
10 Jan 2011, 02:19 PM

Hunter has not been doing very well he has not met his milestones the seizures have been a lot worse since August. Hunter has a seizures syndrome called Otahara Syndrome it is very resistant against all seizures meds. Hunter is on 5 seizure meds and he still has 2 - 4 seizures a day. Right now we are working with Palliative Care (The Wings Team) since Hunter has not been doing very well. So as of now we are hanging onto every moment with our little guy he is now 11 months we almost lost him when he was 9 months so glad we got to spend his 1st Christmas with him. Please check out updates on our little Hunter at his Caringbridge Samantha Isaacson