Newly diagnosed 9-year-old

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Hi everyone,

My 9-year-old daughter had her first seizure on Oct. 1, 2013, and her second on Nov. 26, 2014. The second took place in her sleep, and I only knew because I had laid down with her and fallen asleep, awaking to her convulsions, which again led to an apneic episode. She had been on medication since February 2014. After the second seizure, it was increased. She is on generic Keppra and Onfi. She was officially diagnosed with epilepsy earlier this week, and I've since revised her seizure care plan at school and met with the school's first responders, the principal, and her teacher. I've also been in communication with all her specials teachers. I am also now CPR-certified. This is a trying time, as we did not expect her to have another seizure since it'd been so long since the last. We are on a new journey but have received a lot of support.

I just wanted to put myself and my family out there and hopefully connect with others. Unfortunately, there is no face-to-face support group in Greensboro, North Carolina, where we are located.

Take care.

Kendra

Comments

Support is a thing that many

Submitted by just_joe on Mon, 2014-12-08 - 14:46

Support is a thing that many people don't have a lot of. In this site you can get information along with a way to talk to people that can assist you anytime you need it. This site hasa 24/7 help line that any people can call if they need to get answers or use get information. So if you have questions call them. I am not aware of Onfi so I won't make a statement about it. Keppra has been out for some time. The generic works and I have had no problems with any of the makers. I thought I might have had a problem with it but it wasn't the generic since I had used 4 different generics. I had been in a drug study and aqfter getting off it I started having a few more seizures. Doc check suring my next visit and it took about 1-1 1/2 months for the drug to get complete out of my system which is when the increase started to happen. He added vimpat and since then and the increase of the dosage of vimpat the count is down even farther. With keppra the number of seizures was reduced. The time in those seizures was shortened and the time to get back to normal was also shortened. The same simple partial of focal seizures I was having were 2-8 minutes long and time to get back to normal was 15-45 minutes. The times in those same seizures is now 2-5 seconds and the time to get back to normal is 8-15 seconds. I could have one while standing next to you and you would know nothing about my seizure. So keppra has been the best seizure medication I have ever used in the 50+ years I have been living and dealing with epilepsy. One things I would suggest you do is to use the My epilepsy which can also be found at the bottom of this page in the get help section. Thehad a video to watch which tells you a lot. Fill in all her meds and load it up. If she has a seizure then check that and it has time length and type of seizure. There is a note pad to note things. Like what she did during the seizure. How long it took for her to get back to normal. Use it daily with if she took her meds and if they were taken on time. Give her neurologist permission to bring it up and use it and by doing that he can bring up the different graphs and other things which can help him come up with different meds, dosages and procedures. I do hope this helps and she gets the assistance she needs Please come back and let us know what happens Joe

Support is a thing that many people don't have a lot of. In this site you can get information along with a way to talk to people that can assist you anytime you need it. This site hasa 24/7 help line that any people can call if they need to get answers or use get information. So if you have questions call them. I am not aware of Onfi so I won't make a statement about it. Keppra has been out for some time. The generic works and I have had no problems with any of the makers. I thought I might have had a problem with it but it wasn't the generic since I had used 4 different generics. I had been in a drug study and aqfter getting off it I started having a few more seizures. Doc check suring my next visit and it took about 1-1 1/2 months for the drug to get complete out of my system which is when the increase started to happen. He added vimpat and since then and the increase of the dosage of vimpat the count is down even farther. With keppra the number of seizures was reduced. The time in those seizures was shortened and the time to get back to normal was also shortened. The same simple partial of focal seizures I was having were 2-8 minutes long and time to get back to normal was 15-45 minutes. The times in those same seizures is now 2-5 seconds and the time to get back to normal is 8-15 seconds. I could have one while standing next to you and you would know nothing about my seizure. So keppra has been the best seizure medication I have ever used in the 50+ years I have been living and dealing with epilepsy. One things I would suggest you do is to use the My epilepsy which can also be found at the bottom of this page in the get help section. Thehad a video to watch which tells you a lot. Fill in all her meds and load it up. If she has a seizure then check that and it has time length and type of seizure. There is a note pad to note things. Like what she did during the seizure. How long it took for her to get back to normal. Use it daily with if she took her meds and if they were taken on time. Give her neurologist permission to bring it up and use it and by doing that he can bring up the different graphs and other things which can help him come up with different meds, dosages and procedures. I do hope this helps and she gets the assistance she needs             Please come back and let us know what happens Joe

Support is a thing that many people don't have a lot of. In this site you can get information along with a way to talk to people that can assist you anytime you need it. This site hasa 24/7 help line that any people can call if they need to get answers or use get information. So if you have questions call them. I am not aware of Onfi so I won't make a statement about it. Keppra has been out for some time. The generic works and I have had no problems with any of the makers. I thought I might have had a problem with it but it wasn't the generic since I had used 4 different generics. I had been in a drug study and aqfter getting off it I started having a few more seizures. Doc check suring my next visit and it took about 1-1 1/2 months for the drug to get complete out of my system which is when the increase started to happen. He added vimpat and since then and the increase of the dosage of vimpat the count is down even farther. With keppra the number of seizures was reduced. The time in those seizures was shortened and the time to get back to normal was also shortened. The same simple partial of focal seizures I was having were 2-8 minutes long and time to get back to normal was 15-45 minutes. The times in those same seizures is now 2-5 seconds and the time to get back to normal is 8-15 seconds. I could have one while standing next to you and you would know nothing about my seizure. So keppra has been the best seizure medication I have ever used in the 50+ years I have been living and dealing with epilepsy. One things I would suggest you do is to use the My epilepsy which can also be found at the bottom of this page in the get help section. Thehad a video to watch which tells you a lot. Fill in all her meds and load it up. If she has a seizure then check that and it has time length and type of seizure. There is a note pad to note things. Like what she did during the seizure. How long it took for her to get back to normal. Use it daily with if she took her meds and if they were taken on time. Give her neurologist permission to bring it up and use it and by doing that he can bring up the different graphs and other things which can help him come up with different meds, dosages and procedures. I do hope this helps and she gets the assistance she needs Please come back and let us know what happens Joe

Newly diagnosed 9-year-old

Comments

Support is a thing that many

Submitted by just_joe on Mon, 2014-12-08 - 14:46

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