tag:blogger.com,1999:blog-5680783898929117118.post8281069530768547929..comments2023-10-03T21:08:50.028-05:00Comments on Miss Mira: The Good, The Bad, and the ScreamingUnknownnoreply@blogger.comBlogger2125tag:blogger.com,1999:blog-5680783898929117118.post-26033945450212501882008-08-28T15:42:00.000-05:002008-08-28T15:42:00.000-05:00Just coming in own her story here! So sorry if I m...Just coming in own her story here! So sorry if I may be repeating what any others might request or things you have already tried. Cameran has delt with many of these same issues as Mira. 1st the eating this is a daily battle with her one day she is eating a hotdog her favorite then the next day she will not touch it nor anything else for that matter. Last week she did this she went just about all week with nothing but a few chips but she was drinking good. Her Dr. told us he didnt worry about the eating as much as he did with her not drinking. He says as long as she will take drinks and has a wet diaper then he is ok with her not eating and that she will eat when she gets hungry! Still doesnt make me feel any better but I just know its beacuse she is so stubborn. Now for the sleeping issues. Have you all talked with your neuro about having a sleep study done? Cameran had one done back in April and we got some shocking results. We had been telling them of how often she woke during the night fussing and tossing and turning and screaming out. Well turns out she was waking on average of 21-22 times PER HOUR!!! They put her on Neurontin and she has been sleeping much better. They dont know why she was waking so often but just said alot of kids with seizures have this problem. We worried that it was seizures since she always had more in her sleep then when awake but it wasnt shes been sf for over a year now. So that leads me into my next question....Do you think these could be seizures? We have been told that seizures come in many forms, starring spells, odd laughing spells and even crying seizures(called a Neuro cry). One time Cami was in the hospital for ACTH and we kept hearing this baby cry and cry and cry it seemed like it never stopped. So we asked the nurse why doesnt someone hold that baby and she said he had a Neuro cry that it was like a seizure but caused him to cry instead. I had never heard of such a thing but of course Infantile Spasms was a new one on us as well! SO I just wanted to share a few of those things with you but like I said you might have already known these things. Cameran and Mira look to be about the same age and diagnosed around the same time as well. I hope she soon finds relief!<BR/><BR/>Best Wishes,<BR/>KarenKarenhttps://www.blogger.com/profile/08950923105992561224noreply@blogger.comtag:blogger.com,1999:blog-5680783898929117118.post-61434979254765008462008-08-18T07:48:00.000-05:002008-08-18T07:48:00.000-05:00Love the video! She looks great! I am so sorry a...Love the video! She looks great! I am so sorry about the screaming ... if it's not one, it's the other!!Tishahttps://www.blogger.com/profile/14419300941023103749noreply@blogger.com