Guest guest Posted October 4, 2010 Report Share Posted October 4, 2010 Hi Tabitha...have they suggested doing a sleep deprived or overight EEG? used to wake up crying and doing exactly that kind of crying. It was almost like panic... They did find he was prone to seizures while sleeping (but he was older when he had the first Grand mal generalized seizure). One of the hardest experiences I have had in 's 12 years of life...is trying to figure out why he cries (he doesn't speak). It is still a mystery...but an eeg especially an overnight where they can video tape the episodes. I used to, and still do, videotape daniel's episode...that way you can just show the doc.... Best of luck with beautiful Josie.... , Mom to ..age 12, bilateral diffuse PMG, microcephaly Sent via BlackBerry by AT & T Daughter Hi guys. My daughter Josie is now 7 months old and was diagnosed with PMG at 3 months old. She has yet to have a siezure (knock on LOTS of wood) and is doing great. No medications or any other complications. She does have Asymetrical Crying Facies and microcephaly and is deaf in her right ear. She is progressing amazingly. She is a month behind in gross motor skills because her back isnt very strong and her left shoulder needs help, and her find motor skills they tested her about 4 or 5 months behind because she doesnt play with objects or use her hands to bring objects to her mouth or pick things up. But she is beating a lot of odds and is the happiest baby ever. Herein lies my question. She recently is scaring me with this wierd cry of hers. First off she never cries...EVER! And a couple nights she has woken up with night terrors which run in my family and also comes along with PMG from what ive researched. The cry is so long but she does this ver short loud, ah, ah, ah, ah, ah for almost a minute. If you can imagine the breathing technique when you do lamaze for child birth, the hoo, hoo, hoo real quick breaths, thats what she is doing with the crying. Its so scary and I can get her to stop for almost a minute. She did it one time after I was trying to use the siringe to get snot out of her nose (we are all moms so I know I dont have to be too proper with that wording lol) and thats when I knew it wasnt just associated with night terrors alone. Any suggestions? Anyone heard of it? Thanks again! Tabitha, mother of beautiful perfect baby Josie Quote Link to comment Share on other sites More sharing options...
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