unsinkable Posted March 30, 2013 Share Posted March 30, 2013 She woke up and didn't feel right. I was running errands and when I got home, she told me was feeling weird. Within a few seconds of saying this, she had a seizure. From then on, she never seemed to come back to her baseline before she had another one. After her third, I called the on call neuro. He had her take some extra meds and said if she had 2 more, call him. He thought she might have 1 more before the extra med kicked in so not to worry about a 4th...just call him after a 5 th. Any of you who know me would know that this makes me INSANE. Waiting, feeling like I'm doing nothing, watching my DD suffer. So, FF...she had the 4th, then the 5th. DH called the doc back and told him we're going to the ER and we want Ativan for her. DD is a mess, her head is pounding, she can't walk, she's mentally not back to herself. Then she started vomiting in the car. I wanted so badly for her to feel better my whole body hurt. (DH took the stupid way to the hospital. Then he took the stupider way home.) Fortunately, thank You, God, the ER was quiet. She got right into triage, then a good treatment room. Things happened really fast. They wanted a urine sample and I said no, not until she's stable. I wasn't going to have her seize in the bathroom when she was nice and safe in a bed with rails. They understood, or at least didn't act like I was a lunatic. She was still vomiting and I still can't figure out if it was postictal stuff or if she is sick. They examined her, started an IV, pushed Zofran and Ativan. And it worked. YAY! She was out for a couple hours. We woke her to take her PM meds, which was kind of a struggle bc she was still groggy and her tongue was so bitten up. After a while, when she didn't vomit them back up, she was discharged. LIke, I said DH did take the stupider way home but she didn't vomit again so I mostly didn't say anything. She's still asleep so I don't know how today is going to go. I'm next to her in bed right now and she is really twitchy in her sleep. I'm hoping its a normal sleep cycle and not anything else. I hope she is OK today. Please, please, please is my prayer during times like these. Because I can't think straight to pray anything else. Quote Link to comment Share on other sites More sharing options...
*Michelle* Posted March 30, 2013 Share Posted March 30, 2013 Prayers for you and your daughter. :grouphug: Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted March 30, 2013 Share Posted March 30, 2013 I'm so sorry. (((Hugs))) and prayers. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: Praying for you and her. Quote Link to comment Share on other sites More sharing options...
MooCow Posted March 30, 2013 Share Posted March 30, 2013 Praying she is better today. :grouphug: Quote Link to comment Share on other sites More sharing options...
mumto2 Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: praying Quote Link to comment Share on other sites More sharing options...
AMJ Posted March 30, 2013 Share Posted March 30, 2013 Please please please. Prayers don't need words if the words don't come. We are praying please please please for you all, too. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 30, 2013 Share Posted March 30, 2013 Praying here. I am so happy she is getting treatment. My dd who seizes almost every day and night, many days over and over again is still waiting to see the specialist with no medications or treatments. Quote Link to comment Share on other sites More sharing options...
Impish Posted March 30, 2013 Share Posted March 30, 2013 :grouphug:Praying :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted March 30, 2013 Share Posted March 30, 2013 Does she have Diastat? I'm so sorry, momma. Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 30, 2013 Share Posted March 30, 2013 You know I'm always praying for her, and for you, too, because it is such agony for you to watch her going through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Faithr Posted March 30, 2013 Share Posted March 30, 2013 Wow, definitely praying for you and your dd! Quote Link to comment Share on other sites More sharing options...
Twigs Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
twinmami01 Posted March 30, 2013 Share Posted March 30, 2013 Praying for you. I have experienced this with my boys and their seizures. My heart goes out to you. Hugs and prayers for you and your family. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: :grouphug: :grouphug: Prayers Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 30, 2013 Author Share Posted March 30, 2013 Thank you, everyone. Your kindness and prayers mean so much to me. We don't have diastat. DD is usually so agitated postictally that we were never successful with it. Last year we were fighting to get a nasal delivery system...versed, I think... but stopped fighting when DD started having less breakthrough seizures. Stupid, stupid, stupid, I know. Quote Link to comment Share on other sites More sharing options...
Mergath Posted March 30, 2013 Share Posted March 30, 2013 Poor girl. :( Nothing worse than the headache/puking/confusion after a seizure. If the Ativan works well, can she keep the pills on hand for days like this? I have a big bottle in the cupboard for both anxiety and seizures. If I start to feel an aura, I pop a couple mgs of Ativan and it usually helps. Of course, I have a good amount of time from aura to actual seizure. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 30, 2013 Author Share Posted March 30, 2013 Poor girl. :( Nothing worse than the headache/puking/confusion after a seizure. If the Ativan works well, can she keep the pills on hand for days like this? I have a big bottle in the cupboard for both anxiety and seizures. If I start to feel an aura, I pop a couple mgs of Ativan and it usually helps. Of course, I have a good amount of time from aura to actual seizure. She was prescribed some by a doc that was covering call one weekend. We did use them but her regular doc wasn't comfortable with them and wouldn't refill because they were afraid she'd aspirate. Even tho that didn't happen with the first prescription. It is so frustrating. And I am so mad at myself for burying my head in the sand and thinking we didn't need a rescue med. argh ETA: hit return too soon...I'm so sorry you know this so well on a personal level. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 30, 2013 Author Share Posted March 30, 2013 Praying here. I am so happy she is getting treatment. My dd who seizes almost every day and night, many days over and over again is still waiting to see the specialist with no medications or treatments. I am so sorry your DD is going thru this. I hope she gets seen and treated soon. Like yesterday. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 30, 2013 Author Share Posted March 30, 2013 Praying for you. I have experienced this with my boys and their seizures. My heart goes out to you. Hugs and prayers for you and your family. ((Hugs to you too)) Both your boys have seizures? I'm really sorry. Quote Link to comment Share on other sites More sharing options...
Mergath Posted March 30, 2013 Share Posted March 30, 2013 She was prescribed some by a doc that was covering call one weekend. We did use them but her regular doc wasn't comfortable with them and wouldn't refill because they were afraid she'd aspirate. Even tho that didn't happen with the first prescription. It is so frustrating. And I am so mad at myself for burying my head in the sand and thinking we didn't need a rescue med. argh ETA: hit return too soon...I'm so sorry you know this so well on a personal level. :grouphug: Doctors are so frustrating. Doubly so when they're treating epilepsy, for some reason. And then if you finally find a doctor that will let you try what you want, you have to get insurance to cover it. Argh. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted March 30, 2013 Share Posted March 30, 2013 Hugs to you. We've had days like that, and then find we usually know more than the ER docs (they ask us what we think we should do). We have used diastats for years which generally keep us out of the ER. Dd's neurologist gave us a sublingual med to try instead next time--lorazepam intensol. This is just to find a different delivery method that would be easier on aides on school, not because diastat isn't effective. Phenobarb is one of dd's regular meds (pretty low dose). We double the dose when we hit a bad spell (which tend to go on 2-3 days for us.) I know that prayer well. When you're in the middle of it all, it feels like it will never end. Praying your dd is back on track soon. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted March 30, 2013 Author Share Posted March 30, 2013 Thanks again, everyone. You all are really sweet. Ali, I am going to ask about the lorazepam intensol. It's sounds like just what we need. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted March 30, 2013 Share Posted March 30, 2013 How's she feeling? We had a bad spell last weds and I was sooooo glad we could stay out of the ER. I hope you can find a rescue med rx that'll work! Quote Link to comment Share on other sites More sharing options...
Mergath Posted March 30, 2013 Share Posted March 30, 2013 Thanks again, everyone. You all are really sweet. Ali, I am going to ask about the lorazepam intensol. It's sounds like just what we need. No kidding. You'd think your regular doctor would have mentioned it. :confused1: You should give him a stern talking to next time you're in. Quote Link to comment Share on other sites More sharing options...
Mommy22alyns Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: I'm so sorry, that sounds very hard. Prayers for you both. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted March 30, 2013 Share Posted March 30, 2013 :grouphug: s and prayers here for both of you. Quote Link to comment Share on other sites More sharing options...
violamama Posted March 30, 2013 Share Posted March 30, 2013 I'm sorry! My dad has epilepsy, it's no fun. Can't imagine how it is to help your child deal with that. :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
8circles Posted March 31, 2013 Share Posted March 31, 2013 Oh sink. I'm so sorry. Praying too. :grouphug: Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted March 31, 2013 Share Posted March 31, 2013 Praying!! Quote Link to comment Share on other sites More sharing options...
creekland Posted March 31, 2013 Share Posted March 31, 2013 Glad things are at least a bit better now and hope they continue that way. :grouphug: Quote Link to comment Share on other sites More sharing options...
HRAAB Posted March 31, 2013 Share Posted March 31, 2013 I hope things keep improving. :grouphug: Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted March 31, 2013 Share Posted March 31, 2013 Praying for you and your dd. hope you are ale to get better help for her with the docs Quote Link to comment Share on other sites More sharing options...
MiniBlondes Posted March 31, 2013 Share Posted March 31, 2013 Prayers for you and your daughter! Quote Link to comment Share on other sites More sharing options...
Scarlett Posted March 31, 2013 Share Posted March 31, 2013 She woke up and didn't feel right. I was running errands and when I got home, she told me was feeling weird. Within a few seconds of saying this, she had a seizure. From then on, she never seemed to come back to her baseline before she had another one. After her third, I called the on call neuro. He had her take some extra meds and said if she had 2 more, call him. He thought she might have 1 more before the extra med kicked in so not to worry about a 4th...just call him after a 5 th. Any of you who know me would know that this makes me INSANE. Waiting, feeling like I'm doing nothing, watching my DD suffer. So, FF...she had the 4th, then the 5th. DH called the doc back and told him we're going to the ER and we want Ativan for her. DD is a mess, her head is pounding, she can't walk, she's mentally not back to herself. Then she started vomiting in the car. I wanted so badly for her to feel better my whole body hurt. (DH took the stupid way to the hospital. Then he took the stupider way home.) Fortunately, thank You, God, the ER was quiet. She got right into triage, then a good treatment room. Things happened really fast. They wanted a urine sample and I said no, not until she's stable. I wasn't going to have her seize in the bathroom when she was nice and safe in a bed with rails. They understood, or at least didn't act like I was a lunatic. She was still vomiting and I still can't figure out if it was postictal stuff or if she is sick. They examined her, started an IV, pushed Zofran and Ativan. And it worked. YAY! She was out for a couple hours. We woke her to take her PM meds, which was kind of a struggle bc she was still groggy and her tongue was so bitten up. After a while, when she didn't vomit them back up, she was discharged. LIke, I said DH did take the stupider way home but she didn't vomit again so I mostly didn't say anything. She's still asleep so I don't know how today is going to go. I'm next to her in bed right now and she is really twitchy in her sleep. I'm hoping its a normal sleep cycle and not anything else. I hope she is OK today. Please, please, please is my prayer during times like these. Because I can't think straight to pray anything else. (((Hugs))) please please please is often all I can get out too, so I understand. Praying for you all. Quote Link to comment Share on other sites More sharing options...
PollyOR Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Stacia Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Flowing Brook Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: :grouphug: I hope you all find something that works soon. Quote Link to comment Share on other sites More sharing options...
jenL Posted March 31, 2013 Share Posted March 31, 2013 I'm so sorry! Prayers are with all of you, and God hears our pleas from our hearts even if we can't find the words. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 31, 2013 Share Posted March 31, 2013 Praying for you. Quote Link to comment Share on other sites More sharing options...
I.Dup. Posted March 31, 2013 Share Posted March 31, 2013 Please please please. Prayers don't need words if the words don't come. We are praying please please please for you all, too. Yes. :grouphug: Quote Link to comment Share on other sites More sharing options...
celticmom Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted March 31, 2013 Share Posted March 31, 2013 Easter prayers for you and dd, and dh, too. ;) Quote Link to comment Share on other sites More sharing options...
Cinder Posted March 31, 2013 Share Posted March 31, 2013 :grouphug: praying for your family :grouphug: Quote Link to comment Share on other sites More sharing options...
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