tag:blogger.com,1999:blog-7946092121614357964.post4828322272736361730..comments2023-10-28T02:57:57.520-07:00Comments on What Used To Be Perfect But Now Is Broken: Home from the hospital with some answersANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-7946092121614357964.post-90610224745820693362010-12-02T18:38:16.552-08:002010-12-02T18:38:16.552-08:00I have been thinking about Emily and you. I hadn&#...I have been thinking about Emily and you. I hadn't had a chance to really get on and check blogs to see how her testing went. I am so sorry to hear about the results of the testing but it is a relief to have answers! I will continue to keep y'all in my prayers! <br /><br />Love - HollyHollyDollhttps://www.blogger.com/profile/16754439266534906678noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-61652428420935463852010-11-20T19:58:40.262-08:002010-11-20T19:58:40.262-08:00My daughter, Annie, has LGS as a result of a hypox...My daughter, Annie, has LGS as a result of a hypoxic brain injury secondary to undiagnosed Addison's Disease. Funny how all that rolls off the tongue now. Anyway--we've tried Keto, and now Annie has a VNS. She also takes Banzel, which is also known as Rufinimide, for atonic seizures. It has worked well...although we do get breakthrough seizures--about one every other day. <br />Re: Jean Sullivanhttps://www.blogger.com/profile/12237321202399962876noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-56909062996952276742010-11-14T15:56:30.739-08:002010-11-14T15:56:30.739-08:00Sorry you didn't get better news, but I'm ...Sorry you didn't get better news, but I'm glad she doesn't need brain surgery too! I hope with this new info they will be able to control her seizures somehow, because seizures seriously STINK!!! Love and Big Hugs!!!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-63804275589601986232010-11-14T14:09:36.859-08:002010-11-14T14:09:36.859-08:00Stopping by to say HI Emily. I'm so sorry tha...Stopping by to say HI Emily. I'm so sorry that you are having so many seizures. My heart breaks knowing that. I am grateful that your awesome mom is getting some answers (even as difficult as they can be) to help care for you. (HUGS) n kisses heading your way from your us. Take Care!Lori Oserohttps://www.blogger.com/profile/06326635505124702294noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-44548457955696875372010-11-14T06:00:45.932-08:002010-11-14T06:00:45.932-08:00Sometimes just having an answer is valuable even ...Sometimes just having an answer is valuable even if there is no quick fix. I'm glad you have more information and can now steer in the correct medication direction. The Teenager was put on a medication for her night terrors that makes night terrors worse. Found out from another MD. Grrrrrr! I hate seizures too! Praying for sweet Emily and mommy, too.SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-21538320460742191972010-11-13T23:07:56.310-08:002010-11-13T23:07:56.310-08:00Oh, man, I hated reading "there's another...Oh, man, I hated reading "there's another one, there's another one." And that you were told it's all the time. Answers, but ones that hurt. I am praying, believe me, that you find something that works well. They say it's just trial and error sometimes (most times). I hate that. I really, really wanted to do the keto diet using blended foods, because formula wasn&#conniehttps://www.blogger.com/profile/08675708151247378703noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-41901827393296185242010-11-13T02:02:08.412-08:002010-11-13T02:02:08.412-08:00What a beautiful little girl you have. Sorry about...What a beautiful little girl you have. Sorry about the LGS diagnoses my son has LGS too. Has anyone suggested the Keto Diet? THat was the one thing that stopped the drop seizures for our Finnian.Bronx Cataldo'shttps://www.blogger.com/profile/00690890704919059565noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-82045826882441825032010-11-12T17:06:32.787-08:002010-11-12T17:06:32.787-08:00So glad you got some answers...so sorry you have s...So glad you got some answers...so sorry you have so many more questions with regards to medications. Love her curly hair flopping over the bandages on her head. Too cute!Rebecca Jacksonhttps://www.blogger.com/profile/16961925769061747726noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-44690679388954089162010-11-12T15:45:40.756-08:002010-11-12T15:45:40.756-08:00I am so glad that you were able to receive some an...I am so glad that you were able to receive some answers, but I am sorry that they are ones that come with so much heartache. I will pray that weaning her from the Trileptal will stop the atonic seixures and give her some relief. She is a puzzle, but such a beautiful and joyful little puzzle.Bethanyhttps://www.blogger.com/profile/03739014153757925986noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-85449158381410978072010-11-12T13:59:54.551-08:002010-11-12T13:59:54.551-08:00I'm glad you got an answer, but sorry to hear ...I'm glad you got an answer, but sorry to hear that there is no easy solution. I really hope the change of meds works well for her and that you don't have to consider the really expensive drug.Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-39959907006960577472010-11-12T12:18:56.848-08:002010-11-12T12:18:56.848-08:00Been waiting on an update.Have thought of you ofte...Been waiting on an update.Have thought of you often and was praying that Emily was weathering the days okay.And so hoping your stay was going as best as it could be,in a hospital.<br /><br />Some answers.I think that is a good thing.Makes it easier to go to a game plan and it sounds as if you have one or the beginning makings of one.<br /><br />We went through a pharmacy in New York for one of Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-26492070918297943992010-11-12T11:47:20.823-08:002010-11-12T11:47:20.823-08:00poor Emily. it breaks my heart that she is having ...poor Emily. it breaks my heart that she is having so many seizures. What about the VNS? <--- I think Vagus Nerve Stimulartor? right? Works kind of like a pacemaker for the brain. Have you guys talked about that? <br /><br />I really hope that the new seizure medications work. Q is on Trileptal! but i'm pretty certain that she does not have LGS. <br /><br />Thinking of you i'm so glad Sarahhttps://www.blogger.com/profile/00555971257314801156noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-62788285966529076052010-11-12T10:52:47.218-08:002010-11-12T10:52:47.218-08:00Glad you got some answers! Even more glad Miss Em...Glad you got some answers! Even more glad Miss Em doesn't need surgery!! Did you get the results to the testing for that EE thing you looked into a few months ago? (I have no idea how you spell it, not gonna even try)Emmahttps://www.blogger.com/profile/08965647190492385781noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-12570426750626543362010-11-12T10:31:38.549-08:002010-11-12T10:31:38.549-08:00Wow, I'm glad you are getting some answers and...Wow, I'm glad you are getting some answers and that you might be able to get her on the right seizure meds. Hugs!Colleenhttps://www.blogger.com/profile/13538192615781547765noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-56141891581205429532010-11-12T09:39:09.093-08:002010-11-12T09:39:09.093-08:00So they got lots of info, but no real drugs that w...So they got lots of info, but no real drugs that will be the saving grace. That stinks! Its so nice to have answers though, and hopefully weaning the trileptal will help!Laceyhttps://www.blogger.com/profile/03321275110857561824noreply@blogger.com