Comments on: Febrile Seizures: Information for Parents http://www.catcancook.com/febrile-seizures-information-for-parents/ Easy Recipes and Cooking Tips for Busy People Fri, 12 Mar 2010 02:34:02 +0000 http://wordpress.org/?v=2.9.1 hourly 1 By: Laurie http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-24142 Laurie Sat, 25 Apr 2009 08:07:11 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-24142 I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out. With all of his seizures, he has had a temp greater than 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive. My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too! I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out.
With all of his seizures, he has had a temp greater than 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive.
My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too!

]]> By: Laurie http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-24141 Laurie Sat, 25 Apr 2009 08:05:22 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-24141 I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out. With all of his seizures, he has had a temp greaterthan 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive. My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too! I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out.
With all of his seizures, he has had a temp greaterthan 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive.
My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too!

]]> By: nish http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-23682 nish Tue, 07 Apr 2009 12:16:50 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-23682 ang, the first seizure my little girl had we would have swore she wasn't breathing and she was blue and limp with her eyes rolled back. but the police officer who arrived at our house first said that she was breathing. they said it was a few breaths here and there but we were so nervous and paniced we couldnt tell. not to make you nervous, but im just passing on info that i wish i would have got in the beginning, her doctor also told us that she would probably only have one seizure too. that was her pediatrician, but her pediatric nuerologist told us after her 2nd seizure that if your child has their first seizure after they are 2 they more than likely will only have one. but if they are under the age of 2 their chance of having another one is greater. my little girl was 11 months old with her first one and she has had 7. but now with her keppra and we also carry diastat with us every where we go she is now 5 and in august will be 2 years with no seizures. just please ask your doctor for some diastat, its a valium suppository that you inject when you see the seizure come on. good luck and just remember its okay to kiss her head 50 times a day! let me know how its going! ang, the first seizure my little girl had we would have swore she wasn’t breathing and she was blue and limp with her eyes rolled back. but the police officer who arrived at our house first said that she was breathing. they said it was a few breaths here and there but we were so nervous and paniced we couldnt tell. not to make you nervous, but im just passing on info that i wish i would have got in the beginning, her doctor also told us that she would probably only have one seizure too. that was her pediatrician, but her pediatric nuerologist told us after her 2nd seizure that if your child has their first seizure after they are 2 they more than likely will only have one. but if they are under the age of 2 their chance of having another one is greater. my little girl was 11 months old with her first one and she has had 7. but now with her keppra and we also carry diastat with us every where we go she is now 5 and in august will be 2 years with no seizures. just please ask your doctor for some diastat, its a valium suppository that you inject when you see the seizure come on. good luck and just remember its okay to kiss her head 50 times a day! let me know how its going!

]]> By: ang http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-23529 ang Tue, 31 Mar 2009 03:49:13 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-23529 i am so glad to hear that all your kids are fine. My husband and I found our 11 month old daughter in her car seat, her body was limp, her lips were blue and her eyes were rolled back. We took her out and held her up to see if she would respond and nothing so we started cpr. we thought maybe she was choking, all I know is I thought I lost my baby girl and then with my second breath she gasped and tryed breathing but she still wasn't that responsive. At the hospital they checked her and she had a fever so they then told us she probably had a febrile seizure. they did a ct scan and chest x-ray and all was normal. we are going to bring her to get an eeg but all the doctors keep telling us that febrile seizure are very common and they usually only happen once. But as i am reading all your story's I am seeing that this doesn't seem to be the case. I am so afraid it will happen again and perhaps i will be at work and unable to be their for her. the doctors also reassured us that she would have started breathing on her own even without the cpr. Did anyone experience their child not breathing during the seizure or after and the child started to breath on their own? i am so glad to hear that all your kids are fine. My husband and I found our 11 month old daughter in her car seat, her body was limp, her lips were blue and her eyes were rolled back. We took her out and held her up to see if she would respond and nothing so we started cpr. we thought maybe she was choking, all I know is I thought I lost my baby girl and then with my second breath she gasped and tryed breathing but she still wasn’t that responsive. At the hospital they checked her and she had a fever so they then told us she probably had a febrile seizure. they did a ct scan and chest x-ray and all was normal. we are going to bring her to get an eeg but all the doctors keep telling us that febrile seizure are very common and they usually only happen once. But as i am reading all your story’s I am seeing that this doesn’t seem to be the case. I am so afraid it will happen again and perhaps i will be at work and unable to be their for her. the doctors also reassured us that she would have started breathing on her own even without the cpr. Did anyone experience their child not breathing during the seizure or after and the child started to breath on their own?

]]> By: Ivette http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-22048 Ivette Mon, 09 Feb 2009 03:53:35 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-22048 My daughter is 3years 8 months old. She had her first febrile seizure when she was 17 months. She fell asleep on her dad and all of a sudden she was gasping for air. We thought she was choking. We started turning her upside down, hitting her on her back, calling out her name. We called 911 cause she just seemed stiff and her lips were purple. When we got to the hospital we explained what had happened. They transfered us to a children's hospital for observation. The next day while we were there, I requested her temperature be checked because she felt extremely warm to me. They checked it and said it was normal. I kept telling my husband, how can it be normal she is hot. I layed her on my lap and she started to shake. My husband went and got the nurse. They layed her down on the bed and were walking around so calm. While my husband was yelling is she breathing. It lasted a few minutes. They did all kinds of test and all were normal. Was seen by a team of neurologist while there and they explained to us what febrile seizures were. She had 3 on the same day 4 months later. They lasted about 2 minutes each. So proud of my husband who took care of the situation because I was out of town. 3 months later she had another 3. Had to cancel her 2nd birthday party because that was on her birthday. After that we took her for an EEG - Normal. Doctor gave us Diastat to give her with her first seizure because she gets them in clusters. 1 year 5 months went by without nothing. We were so happy. On Nov.15, 08 she had a very mild one, less than 2 minutes. January 11 she had a 12 minute seizure. It had been so long, that I had forgotten about the Diastat, never crossed my mind. 911 was called and she was kept overnight for observation. Viral Infection. 2 days later took her to her primary doctor and she had strep throat. After reading the stories before me I should be thankful that they only have lasted as long as they have. But, believe me it is the worst thing that I have ever experienced. I found out after the first seizure that I used to get them and I was about 3 1/2 when I had my last one. I just couldn't understand why after this last one, I was having so much anxiety. I constantly check her temperature and she now sleeps with us. I wake up during the night and touch her forehead and if I'm not sure, I check it with the thermometer. I just feel like I'm constantly worring. My husband is the more layed back and says that she's going to have them until she outgrows them. Something we have to deal with, but it's so hard for me. Reading all the articles really made me feel more at ease because I thought I was loosing it with the over doing of checking her. Thank You All So Much For Writing Your Stories. You Have Helped Me More Than I Could Express. My daughter is 3years 8 months old. She had her first febrile seizure when she was 17 months. She fell asleep on her dad and all of a sudden she was gasping for air. We thought she was choking. We started turning her upside down, hitting her on her back, calling out her name. We called 911 cause she just seemed stiff and her lips were purple. When we got to the hospital we explained what had happened. They transfered us to a children’s hospital for observation. The next day while we were there, I requested her temperature be checked because she felt extremely warm to me. They checked it and said it was normal. I kept telling my husband, how can it be normal she is hot. I layed her on my lap and she started to shake. My husband went and got the nurse. They layed her down on the bed and were walking around so calm. While my husband was yelling is she breathing. It lasted a few minutes. They did all kinds of test and all were normal. Was seen by a team of neurologist while there and they explained to us what febrile seizures were. She had 3 on the same day 4 months later. They lasted about 2 minutes each. So proud of my husband who took care of the situation because I was out of town. 3 months later she had another 3. Had to cancel her 2nd birthday party because that was on her birthday. After that we took her for an EEG – Normal. Doctor gave us Diastat to give her with her first seizure because she gets them in clusters. 1 year 5 months went by without nothing. We were so happy. On Nov.15, 08 she had a very mild one, less than 2 minutes. January 11 she had a 12 minute seizure. It had been so long, that I had forgotten about the Diastat, never crossed my mind. 911 was called and she was kept overnight for observation. Viral Infection. 2 days later took her to her primary doctor and she had strep throat. After reading the stories before me I should be thankful that they only have lasted as long as they have. But, believe me it is the worst thing that I have ever experienced. I found out after the first seizure that I used to get them and I was about 3 1/2 when I had my last one. I just couldn’t understand why after this last one, I was having so much anxiety. I constantly check her temperature and she now sleeps with us. I wake up during the night and touch her forehead and if I’m not sure, I check it with the thermometer. I just feel like I’m constantly worring. My husband is the more layed back and says that she’s going to have them until she outgrows them. Something we have to deal with, but it’s so hard for me. Reading all the articles really made me feel more at ease because I thought I was loosing it with the over doing of checking her. Thank You All So Much For Writing Your Stories. You Have Helped Me More Than I Could Express.

]]> By: nish http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-21420 nish Tue, 27 Jan 2009 04:45:11 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-21420 lindsay, im glad to hear your little boy is doing good!! my little girl was 3 1/2 when they put her on keppra. she takes 2ml 2times a day and she is now 5. she hasnt had a seizure since they put her on the medicine.(knock on wood) she is the only one i know that is on keppra but so far so good. we havent noticed any change in her since she has been on the medicine. it does hipe her up for about an hour so we try not to give it to her right before bedtime. we still do carry the diastat suppository (which is vallium) with us every where we go just in case she has a seizure we can give her that too and then go to the er. she even has one that is left at preschool with her. so you might want to ask your doctor if you can get that too. i think your doing the right thing by giving him keppra alot of the other meds have much worse side affects they even take away from their IQ which my doctor says keppra wont. try to be strong and we will keep you in our prayers!! let me know how its going!!! lindsay,
im glad to hear your little boy is doing good!! my little girl was 3 1/2 when they put her on keppra. she takes 2ml 2times a day and she is now 5. she hasnt had a seizure since they put her on the medicine.(knock on wood) she is the only one i know that is on keppra but so far so good. we havent noticed any change in her since she has been on the medicine. it does hipe her up for about an hour so we try not to give it to her right before bedtime. we still do carry the diastat suppository (which is vallium) with us every where we go just in case she has a seizure we can give her that too and then go to the er. she even has one that is left at preschool with her. so you might want to ask your doctor if you can get that too. i think your doing the right thing by giving him keppra alot of the other meds have much worse side affects they even take away from their IQ which my doctor says keppra wont. try to be strong and we will keep you in our prayers!! let me know how its going!!!

]]> By: Lindsay http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-21285 Lindsay Sat, 24 Jan 2009 21:20:23 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-21285 I was so happy to find this site, I felt for so long, that this wasnt happening to any other kids- at least not any that I know....My son Vinnie is 17 months old, and just had his 5th febrile seizure- the first 4 were all soooo short (they seemed long at the time)- about 5-7 minutes, and most of the time it happened while his fever was rising, and he also had an ear infection--- so, we got tubes, and on Christmas, we were just saying, "WOW, Vinnie has gone over 5 months without a seizure!!!"- then on December 30th he had one, very short, not so bad- temp was around 101- i took him to his ped, and they couldnt find a source of the fever, assumed it was something viral, or possibly teething (which, he was getting about 5 teeth)- so we did the motrin and tylenol thing for about 4 days....then he started being himself again, so we stopped, except for Motrin at night. And, then last Sunday around 7in the monring, he had another one (i had given him Motrin at 6:30am)- and from the time he seemed to be dazed....to throwing up....to seizing on just his left side....to dazed again....so seizing again- it was about 45 minutes,(his temp during this time was 98, taken from his ear) and then the paramedics gave him valuim rectally and that pretty much did the trick----- once we got to Children's Hospital, in Pittsburgh (we live only 5 mintues away)- they wanted to admitt him and do tests- they did a spinal tap to rule out menengitis, ect.... a CT, EEG(or is it EKG)- and an MRI, all finding nothing- he was FINE! he had temporary paralysis on his right side (which was SO scary) due to the seizure, it all is back to normal now, though- THANK GOD!! they kept him for 2 nights, because he did then spike a temp of 102 and 103, with NO seizure, since he was on anti-seiz med- so that was good- the ped nurologists at Children's in pgh, are amazing, and since the seizure was one-sided and lasted so long, they just wanted to make sure all was good- they still considered this seizure febrile, stating we could have missed the fever, plus, he eventually got a fever, and they do believe he will grow out of this- but, since he has had so many in only 10 months, they did recommend putting him on Keppra- which, so far so good (it has only been 5 days)- but i have read the side effects can be horrible, so we are holding our breath, crossing our fingers and saying ALOT of prayers! we were also told, along they way, that these seizure, where "no big deal- just scray to the parents"- but for any of us who have gone through this, it is so horrrible, you can imagine anything worse....i am sorry for each and every family and child that has to go through this- but, I am hopefull that our kids will outgrow this, and thankfull it isnt TOO serious or life-threatening..... I was wondering if anyone with a child so young (17 mos) has been put on Keppra and how it has worked- i have read and read about keppra, and they have only done studies on kids as young as 4, which scares me....but, i guess i have to trust medicine and these brilliant doctors who want to help my son.... I will keep you all in my prayers... Lindsay I was so happy to find this site, I felt for so long, that this wasnt happening to any other kids- at least not any that I know….My son Vinnie is 17 months old, and just had his 5th febrile seizure- the first 4 were all soooo short (they seemed long at the time)- about 5-7 minutes, and most of the time it happened while his fever was rising, and he also had an ear infection— so, we got tubes, and on Christmas, we were just saying, “WOW, Vinnie has gone over 5 months without a seizure!!!”- then on December 30th he had one, very short, not so bad- temp was around 101- i took him to his ped, and they couldnt find a source of the fever, assumed it was something viral, or possibly teething (which, he was getting about 5 teeth)- so we did the motrin and tylenol thing for about 4 days….then he started being himself again, so we stopped, except for Motrin at night. And, then last Sunday around 7in the monring, he had another one (i had given him Motrin at 6:30am)- and from the time he seemed to be dazed….to throwing up….to seizing on just his left side….to dazed again….so seizing again- it was about 45 minutes,(his temp during this time was 98, taken from his ear) and then the paramedics gave him valuim rectally and that pretty much did the trick—– once we got to Children’s Hospital, in Pittsburgh (we live only 5 mintues away)- they wanted to admitt him and do tests- they did a spinal tap to rule out menengitis, ect…. a CT, EEG(or is it EKG)- and an MRI, all finding nothing- he was FINE! he had temporary paralysis on his right side (which was SO scary) due to the seizure, it all is back to normal now, though- THANK GOD!! they kept him for 2 nights, because he did then spike a temp of 102 and 103, with NO seizure, since he was on anti-seiz med- so that was good- the ped nurologists at Children’s in pgh, are amazing, and since the seizure was one-sided and lasted so long, they just wanted to make sure all was good- they still considered this seizure febrile, stating we could have missed the fever, plus, he eventually got a fever, and they do believe he will grow out of this- but, since he has had so many in only 10 months, they did recommend putting him on Keppra- which, so far so good (it has only been 5 days)- but i have read the side effects can be horrible, so we are holding our breath, crossing our fingers and saying ALOT of prayers!
we were also told, along they way, that these seizure, where “no big deal- just scray to the parents”- but for any of us who have gone through this, it is so horrrible, you can imagine anything worse….i am sorry for each and every family and child that has to go through this- but, I am hopefull that our kids will outgrow this, and thankfull it isnt TOO serious or life-threatening…..
I was wondering if anyone with a child so young (17 mos) has been put on Keppra and how it has worked- i have read and read about keppra, and they have only done studies on kids as young as 4, which scares me….but, i guess i have to trust medicine and these brilliant doctors who want to help my son….
I will keep you all in my prayers…

Lindsay

]]> By: Susan V. http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-16193 Susan V. Tue, 30 Sep 2008 02:23:24 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-16193 Wow...I stumbled across your site, and I'm glad I did. I just got back from our first trip to the pediatric neurologist. My husband and I have a beautiful boy named Joseph. He had his third febrile seizure on July 6, 2008, in the middle of his 4th birthday party. This was definitly the worst one...it lasted 45 min., and the house was full of people, young and old, to witness it. Thank goodness my older son (a doctor) was home for the party, and could monitor him until the rescue squad arrived. He had his first seizure Dec. 22, 2005, and his 2nd one June 22, 2006. Since they hadn't reocurred in two years, we thought we were "home safe". His seizures occur just prior to a high temperature, and the temperature then follows the onset of the seizure. All three seizures have lead to the discovery of an ear infection once we have arrived at the ER. We never have any warning, but my husband and I spend the better part of our days and nights feeling Joseph's forehead, and probing him with thermometers. If he has even the slight indication of feeling bad or just a bit of temperature, we immediately start the tylenol/motrin, and have him get back in the bed between us for a few days. I sympathisize with all you parents out there...it is truly the most horrible thing to go through. All the doctors say he will grow out of it...I hate to wish away time, but in this case...I'm wishing and praying as hard as I can. I hope my son won't remember any of the worry and anxiety that we are going through...and I hope that one day...maybe 3 or 4 more years from now...I will be able to go to bed and not think about getting up to check Joseph's temperature. I know I'll never forget the harrowing minutes that drag by, waiting for medical help to arrive. For parents who have experiencesd this...we will be haunted with those memories forever. Susan V. Wow…I stumbled across your site, and I’m glad I did. I just got back from our first trip to the pediatric neurologist. My husband and I have a beautiful boy named Joseph. He had his third febrile seizure on July 6, 2008, in the middle of his 4th birthday party. This was definitly the worst one…it lasted 45 min., and the house was full of people, young and old, to witness it. Thank goodness my older son (a doctor) was home for the party, and could monitor him until the rescue squad arrived. He had his first seizure Dec. 22, 2005, and his 2nd one June 22, 2006. Since they hadn’t reocurred in two years, we thought we were “home safe”.
His seizures occur just prior to a high temperature, and the temperature then follows the onset of the seizure. All three seizures have lead to the discovery of an ear infection once we have arrived at the ER. We never have any warning, but my husband and I spend the better part of our days and nights feeling Joseph’s forehead, and probing him with thermometers. If he has even the slight indication of feeling bad or just a bit of temperature, we immediately start the tylenol/motrin, and have him get back in the bed between us for a few days.
I sympathisize with all you parents out there…it is truly the most horrible thing to go through. All the doctors say he will grow out of it…I hate to wish away time, but in this case…I’m wishing and praying as hard as I can. I hope my son won’t remember any of the worry and anxiety that we are going through…and I hope that one day…maybe 3 or 4 more years from now…I will be able to go to bed and not think about getting up to check Joseph’s temperature. I know I’ll never forget the harrowing minutes that drag by, waiting for medical help to arrive. For parents who have experiencesd this…we will be haunted with those memories forever. Susan V.

]]> By: nish http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-15542 nish Mon, 01 Sep 2008 07:35:14 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-15542 im not telling my story to scare the crap out any one but on october 3rd 2004 was one of the worst days of me and my husbands life our little girl which was 11 months old at the time had her very first febrile seizure. and now 4 years later she has had 7 febrile seizures. we heard from our doctor that in some patients they have a pattern and the older they get the more the seizures start to get further apart. which after her 2nd seizure they gave us diastat which is a valium suppository your supposed to inject it if the seizure goes over 5 minutes which we never wait that long.our little girls seizures did have a pattern. at first she would have one every 4 months and then all of a sudden she went 1year and then had one and then 2 weeks later she had another and it repeated itself the year after that. her last seizure which was aug 16th of 2007 was horrible. the doctors sometimes got on to us for not waiting the full five minutes to administer the diastat so the last seizure we waited and the diastat didnt stop it. so we rushed her to the hospital and they we giving her everything they had for seizures and in extremely high doses and the seizure wasnt stopping. and all that kept running through my head was the doctors always saying that these seizures wouldnt hurt her, but it sure didnt seem that way to me. the doctors made us leave the room because they were on the phone with the closest childrens hospital getting advice on how to stop the seizure because nothing they were doing would help. my sister in law is a nurse and she was back there with her. i was trying to listen through the door because noone was telling us anything. the only person that would say anything was a nurse that was out there with us and all she would say is they are doing everything they can for your little girl. and all of a sudden i heard the doctor say that they were calling in the air vac to fly her to the nearest childrens hospital, and at that time my body went numb, and it started to tingle, i thought i was going to pass out but i knew i couldnt because my little girl needed all the attention she could get. so i sat down and just took deep breaths and finally my sister in law came out of the room an hour and a half later crying and said that we could go back there now. and i turned the corner to where my little girl was and seen her laying there with a vinalator hooked up to her and an io which is a iv that they had to stick into the bone of her leg to get meds to her faster. and after an hour and a half later they finally had stopped the seizure but in order to do that they had to put her into a drug induced coma.i couldnt believe that she had had a seizure that bad all of her other seizures were under 5 minutes. any way the air vac finally got there but we couldnt go with her because there wasnt enough room, there was a doctor and nurses from this childrens hospital who was going to be in there with her. but the hospital was an hour and a half from where we were but. of course the air vac got there before we did . but when we got to the hospital they had her in the pediatric icu and there was a team of doctors there immediatley and they were still acting like it wasnt that big of a deal they kept saying shes going to be just fine. of course she wouldnt be the same for a few weeks since she had so much medicine. a little over 24 hours later me and my hsband was exhausted we hadnt ate or slept alls we could do was stare at her and all of a sudden i seen one little eye open and my heart dropped we were so excited we were yelling for the nurse and every one was so happy. about 12 hours after that they took the venilator off and she was breathing all by herself. a couple of hours later she kept trying to say something to me and finally she got it all out and she said "can i please have a white powdered donut"and i justed laughed and said you can have anything you want but she couldnt till the next day. and finally after 5 days in the hospital we were on our way home. but since she has had so many seizures and since the last one was not fever related they put her on a seizure med called keppra. for the first 6 months after she took the medicine her eyes were a little doppy looking and she didnt talk as clear as she had but they said she would get used to the medicine and she did. it doesnt seem to affect her at all now. she is almost 5 now and in preschool and in tap,tumbling,and ballet and she is 100% normal, a little spoiled but we cant help it.she goes to her pediatric neurologist every 6 months and he says shes perfect. but me and my husband is like everyone else i've read about we kiss her head 50 times a day and if she does have a fever our world comes to a complete stop untill she feels better. we feel everyones pain out there and we pray for everyone because it is the scarriest thing in the world. sorry it was so long but once i started i couldnt shut up. im not telling my story to scare the crap out any one but on october 3rd 2004 was one of the worst days of me and my husbands life our little girl which was 11 months old at the time had her very first febrile seizure. and now 4 years later she has had 7 febrile seizures. we heard from our doctor that in some patients they have a pattern and the older they get the more the seizures start to get further apart. which after her 2nd seizure they gave us diastat which is a valium suppository your supposed to inject it if the seizure goes over 5 minutes which we never wait that long.our little girls seizures did have a pattern. at first she would have one every 4 months and then all of a sudden she went 1year and then had one and then 2 weeks later she had another and it repeated itself the year after that. her last seizure which was aug 16th of 2007 was
horrible. the doctors sometimes got on to us for not waiting the full five minutes to administer the diastat so the last seizure we waited and the diastat didnt stop it. so we rushed her to the hospital and they we giving her everything they had for seizures and in extremely high doses and the seizure wasnt stopping. and all that kept running through my head was the doctors always saying that these seizures wouldnt hurt her, but it sure didnt seem that way to me. the doctors made us leave the room because they were on the phone with the closest childrens hospital getting advice on how to stop the seizure because nothing they were doing would help. my sister in law is a nurse and she was back there with her. i was trying to listen through the door because noone was telling us anything. the only person that would say anything was a nurse that was out there with us and all she would say is they are doing everything they can for your little girl. and all of a sudden i heard the doctor say that they were calling in the air vac to fly her to the nearest childrens hospital, and at that time my body went numb, and it started to tingle, i thought i was going to pass out but i knew i couldnt because my little girl needed all the attention she could get. so i sat down and just took deep breaths and finally my sister in law came out of the room an hour and a half later crying and said that we could go back there now. and i turned the corner to where my little girl was and seen her laying there with a vinalator hooked up to her and an io which is a iv that they had to stick into the bone of her leg to get meds to her faster. and after an hour and a half later they finally had stopped the seizure but in order to do that they had to put her into a drug induced coma.i couldnt believe that she had had a seizure that bad all of her other seizures were under 5 minutes. any way the air vac finally got there but we couldnt go with her because there wasnt enough room, there was a doctor and nurses from this childrens hospital who was going to be in there with her. but the hospital was an hour and a half from where we were but. of course the air vac got there before we did . but when we got to the hospital they had her in the pediatric icu and there was a team of doctors there immediatley and they were still acting like it wasnt that big of a deal they kept saying shes going to be just fine. of course she wouldnt be the same for a few weeks since she had so much medicine. a little over 24 hours later me and my hsband was exhausted we hadnt ate or slept alls we could do was stare at her and all of a sudden i seen one little eye open and my heart dropped we were so excited we were yelling for the nurse and every one was so happy. about 12 hours after that they took the venilator off and she was breathing all by herself. a couple of hours later she kept trying to say something to me and finally she got it all out and she said “can i please have a white powdered donut”and i justed laughed and said you can have anything you want but she couldnt till the next day. and finally after 5 days in the hospital we were on our way home. but since she has had so many seizures and since the last one was not fever related they put her on a seizure med called keppra. for the first 6 months after she took the medicine her eyes were a little doppy looking and she didnt talk as clear as she had but they said she would get used to the medicine and she did. it doesnt seem to affect her at all now. she is almost 5 now and in preschool and in tap,tumbling,and ballet and she is 100% normal, a little spoiled but we cant help it.she goes to her pediatric neurologist every 6 months and he says shes perfect. but me and my husband is like everyone else i’ve read about we kiss her head 50 times a day and if she does have a fever our world comes to a complete stop untill she feels better. we feel everyones pain out there and we pray for everyone because it is the scarriest thing in the world. sorry it was so long but once i started i couldnt shut up.

]]> By: DD http://www.catcancook.com/febrile-seizures-information-for-parents/comment-page-1/#comment-15482 DD Sat, 30 Aug 2008 18:26:11 +0000 http://www.catcancook.com/2007/11/15/febrile-seizures-information-for-parents/#comment-15482 Hazel thank you so much for all the suggestions. My husband and I are from Michigan. We were curious to know more information on the hospitals you were talking about that specialize in seizures. Are these specialists general neurologists or are they holistic? If the doctors in Canada can give us more information we are willing to take the trip (you guys are our neighbors)!!! It would be great to find out what the cause is. This has been the most mentally straining incident in my life. My mind is constantly running with thoughts and fears of my baby. I really would love to pinpoint the cause. THANKS AGAIN HAZEL AND EVERYONE ELSE!!! GOD BLESS YOU AND YOUR FAMILIES Hazel thank you so much for all the suggestions. My husband and I are from Michigan. We were curious to know more information on the hospitals you were talking about that specialize in seizures. Are these specialists general neurologists or are they holistic? If the doctors in Canada can give us more information we are willing to take the trip (you guys are our neighbors)!!! It would be great to find out what the cause is. This has been the most mentally straining incident in my life. My mind is constantly running with thoughts and fears of my baby. I really would love to pinpoint the cause. THANKS AGAIN HAZEL AND EVERYONE ELSE!!! GOD BLESS YOU AND YOUR FAMILIES

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