unsinkable Posted November 6, 2010 Share Posted November 6, 2010 She is still in the hospital now. DH is with her while I came home to shower & see the boys. She might be able to come home later this afternoon if she doesn't have a seizure or have anything else happen. She hasn't been this bad since she was diagnosed 10 years ago. She had a big one at home and one in the hospital. They released her a few hours after the one at the hospital and she had the biggest one in the car as I was driving her home. I was so terrified that she was going to stop breathing and die in my arms in the gas station I had pulled into when it started. I was around a mile from the hospital but I couldn't drive back because she was nearly in my seat with me. So I sat there, waiting for the seizure to stop and I was begging God, just begging Him to let me get her safely back to the hospital. It lasted about 3 minutes and when she stopped seizing, she was unconscious. I drove back with her leaning on me, she was completely out. I put my hazards on and honked my horn because I was hoping a police car would see me and help escort me or something. I got back to the ER and ran in to get help. They came out with a gurney and took her to a trauma room. (this security guard was so nice. He parked my car for me and then brought me my keys.) It was just surreal. One of the attendings was trying to convince a nurse that I did indeed mean that DD was discharged at 9 PM today and not 9 AM. And the nurse kept saying but that was just a little while ago! By this time she was conscious but completely not herself. She kept yelling "leave me alone" over and over and "mommy make them stop." She hadn't acted that way ever in her whole life after a seizure. They finally gave her ativan in the hopes it might break the cycle of what was keeping her so hysterical. CT was normal. Everything else was normal. Neurology thinks it's just time for a meds dose increase. I hope that is it. Please pray for my sweet girl. And for the rest of us. I was at the end of my rope a while ago. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted November 6, 2010 Share Posted November 6, 2010 (edited) Oh my. That makes me...oh my. I will certainly pray for you and your daughter. Do you have Diastat? I think it would help me go on without feeling I was constantly on terrified alert. Edited November 6, 2010 by sbgrace Quote Link to comment Share on other sites More sharing options...
CAMom Posted November 6, 2010 Share Posted November 6, 2010 :grouphug::grouphug:I'm so sorry you guys had such a horrible experience...:grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted November 6, 2010 Share Posted November 6, 2010 I'm so sorry! How terrifying. I'm praying. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted November 6, 2010 Share Posted November 6, 2010 Praying for you and your daughter. I'm so sorry that you had such a terrifying experience - praying for answers for you.:grouphug: Quote Link to comment Share on other sites More sharing options...
TN Mama Posted November 6, 2010 Share Posted November 6, 2010 Bless her heart and yours. I simply cannot imagine. Saying prayers for your sweet girl and for you. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
JudoMom Posted November 6, 2010 Share Posted November 6, 2010 Oh, I'm so sorry. I will be praying :grouphug:. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted November 6, 2010 Share Posted November 6, 2010 I'm SO sorry! How absolutely TERRIFYING!!!!! I pray the neurologists get to the bottom of it!!!!!!!! Have you ever researched neuro/biofeedback for her seizures? There's a man in NH who got his daughter further along than her neurologist ever could with conventional treatment. She lives a normal life now and will always have to take medication. Before neurofeedback, he said he was completely losing his daughter. :grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted November 6, 2010 Share Posted November 6, 2010 :grouphug: How awful for you all. I hope things improve!! Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted November 6, 2010 Share Posted November 6, 2010 :grouphug: My dad and brother both had seizures, my father passed many years ago but never got them under control and my brother has been drug free and seizure free for many years. That is one of the things I am most fearful of with my dd. I do hope the doctors can help you. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted November 6, 2010 Share Posted November 6, 2010 I'm so sorry for what your family is going through. My dd has a refractory seizure disorder and we've been there, done that - many more times than I care to remember. Definitely get some diastat to keep on hand. I'll be praying for ya'll! Blessings, ¸.·´ .·´¨¨)) ((¸¸.·´ .·´ -:¦:-Tina ~ -:¦:- ((¸¸.·´* http://seasonsoflearning.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted November 6, 2010 Share Posted November 6, 2010 :grouphug: How scary! My DD2 has seizures and keeping Diastat around has been such a lifesaver. I hope she recovers and a med change stops them! Quote Link to comment Share on other sites More sharing options...
MamaT Posted November 6, 2010 Share Posted November 6, 2010 I'm so sorry you had such an awful experience. :grouphug: I will be praying for you and your dd. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted November 6, 2010 Share Posted November 6, 2010 :grouphug:Prayers here:grouphug: Quote Link to comment Share on other sites More sharing options...
lionfamily1999 Posted November 6, 2010 Share Posted November 6, 2010 :( :grouphug: Praying for you and yours. Quote Link to comment Share on other sites More sharing options...
Stacia Posted November 6, 2010 Share Posted November 6, 2010 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
kalanamak Posted November 6, 2010 Share Posted November 6, 2010 Seizures make one feel so helpless.:grouphug: Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted November 6, 2010 Share Posted November 6, 2010 That is absolutely terrifying!! I'm SO sorry you had to go through that. Two of my children have had seizures and I was absolutely convinced they were going to die. It was horrific. I pray they figure this out quickly. Quote Link to comment Share on other sites More sharing options...
Imprimis Posted November 6, 2010 Share Posted November 6, 2010 I'm so sorry she's going through that. I can only imagine how frightening that must be. :grouphug: Quote Link to comment Share on other sites More sharing options...
mazakaal Posted November 6, 2010 Share Posted November 6, 2010 How frightening. I'll be praying for you and your dd. Quote Link to comment Share on other sites More sharing options...
amyable Posted November 6, 2010 Share Posted November 6, 2010 Praying!!:grouphug: Quote Link to comment Share on other sites More sharing options...
Luckymama Posted November 6, 2010 Share Posted November 6, 2010 Oh my word :grouphug: Quote Link to comment Share on other sites More sharing options...
sparrow Posted November 6, 2010 Share Posted November 6, 2010 How terribly frightening :grouphug: . Quote Link to comment Share on other sites More sharing options...
Pretty in Pink Posted November 6, 2010 Share Posted November 6, 2010 How scary. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
justamouse Posted November 6, 2010 Share Posted November 6, 2010 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted November 6, 2010 Share Posted November 6, 2010 Praying for you and your daughter. :grouphug: Quote Link to comment Share on other sites More sharing options...
King Alfred Academy Posted November 6, 2010 Share Posted November 6, 2010 :grouphug: Oh...I can't even imagine what that was like for you! I'm in tears trying to...so I think I better stop. :grouphug: Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted November 6, 2010 Share Posted November 6, 2010 Oh wow. Dh's seizures aren't nice, but your poor dd's sound much worse. :grouphug: Rosie Quote Link to comment Share on other sites More sharing options...
unsinkable Posted November 6, 2010 Author Share Posted November 6, 2010 UPDATE: Thanks so much everyone! She's home and resting. I wish I had the energy to type it all out about what happened and how it all progressed...it was all so bizarre and atypical of her seizure pattern. I think she was getting auras that scared her and then she was cycling thru some long absense seizures until she had the big tonic-clonic seizures. And now that I am typing it, I realize that the big seizures were about 3.5 hours apart. Just so strange. I am so glad she is feeling better. We got a new script for the diastat...I just can't imagine using it on a teenager? Quote Link to comment Share on other sites More sharing options...
lionfamily1999 Posted November 6, 2010 Share Posted November 6, 2010 :grouphug: I'm glad you're all home. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommy22alyns Posted November 7, 2010 Share Posted November 7, 2010 :grouphug: How terribly scary. Quote Link to comment Share on other sites More sharing options...
kristavws Posted November 7, 2010 Share Posted November 7, 2010 How frightening. Your family will be in my prayers. :grouphug: Krista Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted November 7, 2010 Share Posted November 7, 2010 I hope your daughter stabilizes soon. We live with seizures here and I guess the frequency of them makes them a little less scary. We have several each month. Dd almost always comes out of them on her own, but they can go on for 5 minutes. She does not get blue lips or have other signs of breathing problems. Our protocol is that we don't pull out the diastat until we hit the 5 minute mark (actually more commonly we use the diastat when she has cluster seizures--one after another). I would not hesitate to give diastat to a teenager who is seizing--it's the fastest way to get the potentially life-saving medicine in them. Using it is scary the first time, but when you know how your child reacts to the medicine it isn't bad. We don't always know why dd is having seizures, but two very obvious triggers are coming down with an illness or lack of sleep. If dd is getting sick, a seizure is the first sign we have of it--before fever or coughing or anything else. If we keep dd up too late or if she has trouble sleeping, seizures the next day are likely. Not sure how old your dd is, but seizure patterns can change during puberty. Good luck getting everything back under control. Quote Link to comment Share on other sites More sharing options...
EKS Posted November 7, 2010 Share Posted November 7, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
Ginevra Posted November 7, 2010 Share Posted November 7, 2010 Oh my word! How absolutely horrible for you! :grouphug: I will pray tonight for your dd. Quote Link to comment Share on other sites More sharing options...
Kfamily Posted November 7, 2010 Share Posted November 7, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted November 7, 2010 Share Posted November 7, 2010 Praying for you. That would be so frightening! Quote Link to comment Share on other sites More sharing options...
melissel Posted November 7, 2010 Share Posted November 7, 2010 Unsinkable, my heart is pounding and my eyes are wet just from reading your first post :( :grouphug: I can't even imagine what your day has been like. I'm glad you're all home and (relatively) calm. I hope everything normalizes very quickly :grouphug: Quote Link to comment Share on other sites More sharing options...
iona Posted November 7, 2010 Share Posted November 7, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
Carpe Diem Posted November 7, 2010 Share Posted November 7, 2010 I am so sorry to read about your daughter's seizures. I saw a woman have a seizure and it was very alarming. I can't imagine watching my child suffer through a seizure. I am glad you are home and that she has had an adjustment to her medication. I pray that this will be the answer she needs. :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted November 7, 2010 Share Posted November 7, 2010 :grouphug: seizures are awful :grouphug: I use to think seizures = epilepsy or brain tumor, until my sister started getting them, she has some form of Multiple Sclerosis in her brain, not spine. which gives her seizures, apparently that form of MS isn't as debilitating. She has had to be put on life support twice for three days at a time, because they just couldn't stop the seizures. Quote Link to comment Share on other sites More sharing options...
sheryl Posted November 7, 2010 Share Posted November 7, 2010 :grouphug::grouphug::grouphug: The Lord has brought you and your dd to mind quite often. So many in the last few months have posted about dc's seizures and I kept a list of names and now I can't find it....to pray specifically. But, I'll continue to pray for your precious dd and look for the list. We pm'd and I explained that my dd has controlled epilepsy as well. She has NOT started her cycle yet, but hope that she continues to do well. I just am at a loss for words. However, when I read this it indicates that perhaps a 2nd opinion is in order. I don't recall what you mentioned in our pm about that, IF I mentioned it. It seems like a little thing, but I do belive it would be beneficial. My dd's first neurol. took too long to "stabilize" her. We switched and this 2nd neurol of 2 years has been a blessing. I know that you're dd was stabilized for quite a long time if I remember correctly. And, yes, a change in the med itself and/or doseage seems reasonable. I really do think if you could swing another opinion, that would give "new and/or additional" insight/confirmation.....maybe even new ideas. Will pray. Please feel free to pm me anytime. Sheryl <>< Quote Link to comment Share on other sites More sharing options...
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