My 15 yr old 2 seizures this week first time- questions for y'all

[Auctions]

Hi, my 15 yr old had a seizure at school Tuesday. She exhibited tonic clonic behavior- strange noise, collapse, eyes rolled back, drooling, showing for a few minutes then unresponsive for a while, when roused trouble talking, memory, headache. The Er dismissed us saying she probably fainted. Then today, 3 days later she went to the nurse, said she wanted to stay there cuz her legs felt funny and she couldn't think right. About 1 1/2 hours later she had another. The seizure lasted 4 minutes. We went back to the hospital- cat scan and bloodwork fine. Prescribed kepra and given the suppository gel in case she does this again a it goes longer.
Well, first, she's never had a seizure before although a few months ago one morning she said she thought something happened to her, may seizure but she may have been dreaming. But now this- 2 in 3 days. Is this normal? Do people have these type seizures that often? Also just starting at 15. Others here also? I am scared to death- neuro appt next Tuesday. I am afraid to leave her alone. She is worried about her health and embarrassed this happened at school twice.
I don't know what I'm really asking but glad I found this place. I'm off to pick up her meds and hoping she never has another seizure again

 

[Fedup]

Auctions

She and you are bound to be very worried, but pull back a second - I know its easy for me to say - but worrying is no doing you any good. Wheather this is normal for a 15 year old I do not know as I along with others have had this since birth. First take a breath you know you are not going to let anything happen all you can do is wait for the neurologist appointment there is one thing you need to know keppra can cause keppra rage that is a bad change in mood so watch out for it. You need to take a pen and paper and start keeping a diary of everything that happens during a seizure, before and after, I hope she never has another seizure as well as you but in the mean time stop and think are you helping yourself or your daughter with all this worrying. We all feel for you and any question that comes to mind we will try and answer.

 

[MAB]

I don't have any advice as this is all new to me too but just want you to know you aren't alone. As a mother and a grandmother, I know I would be frantic if it was my son or grandson that was having seizures, especially TC seizures.

 

[Auctions]

Thanks! I know. I am trying to stay calm. I am learning all I can and let me tell you I had no idea just how scary seizures are. I never have known anyone who had them. I will definately watch the meds- I had a bs experience with chantix and remember suddenly realizing after people had tried to tell me that I had turned into a raving suicidal lunatic without realizing it.
Well, if anyone has good advice for basic life changes we should make to keep her safe or ways to prevent seizures I am all ears and will be reason through all these threads. Thanks for having me and I am hoping that my daughter will check this site out. Jennifer

 

[MAB]

Thanks! I know. I am trying to stay calm. I am learning all I can and let me tell you I had no idea just how scary seizures are. I never have known anyone who had them. I will definately watch the meds- I had a bs experience with chantix and remember suddenly realizing after people had tried to tell me that I had turned into a raving suicidal lunatic without realizing it.
Well, if anyone has good advice for basic life changes we should make to keep her safe or ways to prevent seizures I am all ears and will be reason through all these threads. Thanks for having me and I am hoping that my daughter will check this site out. Jennifer

Jennifer, I have learned a lot from this website over the last 2-3 weeks but there is still so much I don't know. There are drugs that really can mess you up, like Chantix. Ambien is another one, it made me a raving homicidal/suicidal manic. It was scary. Margie

 

[chmmr]

Thanks! I know. I am trying to stay calm. I am learning all I can and let me tell you I had no idea just how scary seizures are. I never have known anyone who had them. I will definately watch the meds- I had a bs experience with chantix and remember suddenly realizing after people had tried to tell me that I had turned into a raving suicidal lunatic without realizing it.
Well, if anyone has good advice for basic life changes we should make to keep her safe or ways to prevent seizures I am all ears and will be reason through all these threads. Thanks for having me and I am hoping that my daughter will check this site out. Jennifer

I am so sorry to hear you are going through this. You definitely need to start taking seizure precautions right away, particularly near water. No unsupervised baths (showers are best), no locking the bathroom door when she is taking a shower or even when going to the bathroom etc (i have heard of others that use a sign on the door so that people still have privacy).
You can google links to seizure precautions from a number of sites-here is one i found: http://columbiaepilepsy.org/patient-education/seizure-precautions.html

I hope the meds settle things down for both of you and the neurologist is able to help you get some answers next week.

 

[masterjen]

I have a couple of thoughts:
-Be aware that once your daughter is up to the full dose, it will take about a month (sometimes longer) to adapt to any of the more common side-effects (she may have none at all), but do make yourself aware of any serious side effects so you can help her watch out for them.
-You may be seeing a neurologist who is very knowledgable about seizures, but if the medication doesn't work once she is up to the full dose and you have given it a fair 4-6 weeks to try it, be willing to try another medication but if that one is not successful (or has intolerable side effects), ask that she be referred to an epileptologist - preferably one who has experience with kids and teens.
-Continue to keep track together of symptoms related to seizures, how she is feeling on each level of medication she is on (ie. how does she feel on 500 mg, then when it is increased to 1000 mg how does she feel, etc.)
-Keep her safe, but try to allow her as much independence as you can as a worried parent! Help her determine what activities are safe to do; eg. it may not be appropriate for her to do any babysitting at this point in time.
-stress and inadequate sleep are big seizure triggers. Encourage at least 8 hours of sleep every night, and if school work seems to be stressful for her, you may need to speak with her teachers about extending homework deadlines or reducing quantity of homework, especially near exam time.

People here can be great support; I hope you continue to hang around!

 

[31brownie]

This is new to me to. You have to find the right specialist because I went to a neurologist - a few of them, actually, who mis-diagnosed me. It was once I went to an epileptologist (thanks - Dr. Mehta), when everything was put together and made sense.

If you get a gut feeling that you don't agree with the doctor, you're probably right. move on and find another neurologist - but look for someone who really only deals with seizures all the time.

Like there are stroke neurologists, headache neurologists, multiple sclerosis neurologists - there are also seizure/epilepsy neurologists.....you should go to one like that.

 

[31brownie]

if you live in NJ - my neurologist/epileptologist is the best! love him

 

[Kgartner]

Welcome. I also have a 15-year old daughter who had her first seizures recently (7 weeks ago for us), and who is also on Keppra. I know what you are going through. Those first few weeks I was a complete mess. I am now somewhat less of a mess, but this journey is very emotionally difficult both for my daughter and for all of us in her family.

It does get easier. Hopefully the Keppra will work and you will stop holding your breath all the time. It helps a lot if you are in communication with everyone in her life - I sent e-mails to all the parents of her friends, and to the families we carpool with that included her medical information and seizure first-aid. Once I did that I felt comfortable with her hanging out at their houses. In fact, she has gone away for the weekend with one of her friends and their family. I couldn't even conceive of that just a few weeks ago!

I also keep a daily log that includes a bunch of information - the amount of sleep she got, anything unusual that happened that day, her mood (which is being affected by the Keppra, but not intolerably), and anything else that seems important. It has been very helpful in my folllow-up communications with her neurologist.

Also, make sure you have a neurologist you like and can communicate with. We are blessed to have a Level 4 Pediatric Epilepsy Center in our city, and I have been very happy with our care. But what has mattered the most to me as a mom is that my neurologist returns my calls in a timely fashion, patiently answers my questions, and listens. I called him many many times those first few weeks, and now have set up a way to communicate with him online and he is always available to me.

This is scary and life-changing. I wish you all the best. Feel free to private message me - we are really in the same boat!

 

[MAB]

Welcome. I also have a 15-year old daughter who had her first seizures recently (7 weeks ago for us), and who is also on Keppra. I know what you are going through. Those first few weeks I was a complete mess. I am now somewhat less of a mess, but this journey is very emotionally difficult both for my daughter and for all of us in her family.

It does get easier. Hopefully the Keppra will work and you will stop holding your breath all the time. It helps a lot if you are in communication with everyone in her life - I sent e-mails to all the parents of her friends, and to the families we carpool with that included her medical information and seizure first-aid. Once I did that I felt comfortable with her hanging out at their houses. In fact, she has gone away for the weekend with one of her friends and their family. I couldn't even conceive of that just a few weeks ago!

I also keep a daily log that includes a bunch of information - the amount of sleep she got, anything unusual that happened that day, her mood (which is being affected by the Keppra, but not intolerably), and anything else that seems important. It has been very helpful in my folllow-up communications with her neurologist.

Also, make sure you have a neurologist you like and can communicate with. We are blessed to have a Level 4 Pediatric Epilepsy Center in our city, and I have been very happy with our care. But what has mattered the most to me as a mom is that my neurologist returns my calls in a timely fashion, patiently answers my questions, and listens. I called him many many times those first few weeks, and now have set up a way to communicate with him online and he is always available to me.

This is scary and life-changing. I wish you all the best. Feel free to private message me - we are really in the same boat!

I agree about having a doctor that you like and returns calls. My doctor returned my call from home on a Sunday evening. She called me 3 times that night until we found a 24 hour pharmacy that was within a reasonable distance from me. I felt terrible bothering her, I could hear a young child in the background wanting her attention, but she was very patient with me and did a great job keeping me from freaking out. Her office staff is great too.

 

[Auctions]

I love this site! Thanks to all. So, I am in Atlanta, Marietta ga to be specific - anyone know a good doc to pursue? We are set to see panda next week. Anyone been there? Atlanta specialist I should know about?

 

[Cint]

Hi Jennifer and Welcome to CWE,

Sorry to hear you and your daughter are going thru this awful time, but once you find the right treatment, it does get better. I am the one in my family with E and have had it for over 30 years, so it's my kids that have seen some awful seizures. Scary stuff for them to go thru. I go to a Level 4 epilepsy center and see an epileptologist.

Here is a website that can direct you to a pediatric epilepsy center:
http://www.aesnet.org/find-a-dr/find-a-doctor-epilepsy-com

And this one explains epilepsy:
http://www.epilepsy.com/epilepsy/main_epilepsy

 

[jenbayly17]

Auctions,
I understand what your daughter is going through. I had some convulsions as a baby and was medicated for a while and then they took me off meds until my seizures happened against but not until I was 12 and my first one was at school as well. At the time I was embarrassed but I learned to talk about it to my friends and teachers made me more comfortable. If people know about things that can happen they are more likely to take proper precautions and be ready to help. There are definitely meds that can help prevent seizures which is really a trial and error process. But keeping a daily log of her activities, feelings, sleep, foods can help immensely. Make use of any knowledge you gain from this site. I just found this site this year and wish I had known about it earlier. Don't be afraid to ask questions and also call your neurologist with your concerns they should be able to help with information about side effects or anything that presents itself. Please keep in touch. And you may want to have your daughter come on and read a few things or let her ask questions as well. It's a good outlet to know she isn't alone.
Jen