Hey everyone, my name is Dee and I have a daughter who is 17. She started having seizures at 8 and we were told that she was part of the 30% that there was no explanation for her seizures. That was in 1999. After being on lamictal for 7 years she had an allergic reaction to it and in December of 07 was put on Topomax. Since then she has had 2 grand mal seizures and I can't get her to get out of bed more than to walk to the bathroom or kitchen. Does it take awhile to adjust to this medicine? Her neurologist also suggested that I apply for disability for her. I don't even know where to start. The first grand mal seizure that she had caused her to aspirate. She was in the hospital for a week and she has never been the same. She is developmentally delayed and it seems to be getting worse. I would appreciate any suggestions that anyone has.
So many questions!!!
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skillefer
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Hi Dee! Sorry to hear about your daughter. It's not unusual for meds to have to be changed. And it's not unheard of for the types of seizures to change. As a special ed. teacher, and someone with E, I really encourage you to stop and think about how you responded to the grandmals. I know that they're scary to watch. (I used to be a first responder, and had to drag a guy who was having one out from under a bathroom stall.)But you need to remember that how you react effects how your child reacts to the seizures. Also, seizures hurt the memory. I have firsthand knowledge of that. 
As for the sleepiness...that can happen when changing meds or upping doses. Don't know for certain about that specific med, but that's what it's been for the ones I've been on. It only lasted with me for a week. Any longer and I would be calling the doctor. Part of your daughters reaction might just be a fear of doing something that will make her have another seizure, or even embarrassment. That's all I can suggest.
As for the sleepiness...that can happen when changing meds or upping doses. Don't know for certain about that specific med, but that's what it's been for the ones I've been on. It only lasted with me for a week. Any longer and I would be calling the doctor. Part of your daughters reaction might just be a fear of doing something that will make her have another seizure, or even embarrassment. That's all I can suggest.Thanks for replying!
She hadn't had any problems for almost 2 years and we were getting ready to do an eeg to see if she could be weaned off of her medicine when this happened so it was really disheartening! I try to keep my composure but when her lips are turning blue it really gets to me. She told her doctor the other day that she doesn't want to go anywhere because she is afraid she will have a seizure in front of people. It breaks my heart sometimes. I just wish we knew why she is having them and could do something to stop the seizures!
She hadn't had any problems for almost 2 years and we were getting ready to do an eeg to see if she could be weaned off of her medicine when this happened so it was really disheartening! I try to keep my composure but when her lips are turning blue it really gets to me. She told her doctor the other day that she doesn't want to go anywhere because she is afraid she will have a seizure in front of people. It breaks my heart sometimes. I just wish we knew why she is having them and could do something to stop the seizures!
skillefer
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It could be lots of things that are triggering....it could be hormones, blood sugar levels, her monthly, the type of light bulbs that your using...And I know it's scary. My hubby and I were talking about how he felt when I have seizures just the other day...he said that at first, it was really hard. Because he felt like it was his fault in some odd way. But as time has passed, he's gotten more comfortable with it. For me, that's really important. You see, my mom used to get a panicky and worried look on her face. That was her way of dealing with it, and it made me feel guilty for having the seizure in the first place. Now my dad, he would smile at me and find a way to joke around about it..you know, ask if I really wanted to get out of taking a test at school that bad. With him, I felt so at ease and relaxed after a seizure. With my mom, I was way more stressed. Also, grand mals can be embarrassing..especially when your a teenager just wanting to be liked by people at school. Trust me, I know. The thing that helped me was something that my mom did....she found something that I was really good at and enjoyed and encouraged me in it. For me, that was singing in the school choir. She paid for private voice lessons. My senior year, I was invited to join a professional opera company. I didn't want to though...I wanted to be a teacher instead. The thing is, your child just wants to be normal. She doesn't want you or her friends to treat her differently. She just wants to be like everyone else...so help her. Help her to get back to feeling like her old self. Sit down and talk to her, and then move on. Get back to her old routines. IT'll be scary at first, but it will definitely help her.
With him, I felt so at ease and relaxed after a seizure. With my mom, I was way more stressed. Also, grand mals can be embarrassing..especially when your a teenager just wanting to be liked by people at school. Trust me, I know. The thing that helped me was something that my mom did....she found something that I was really good at and enjoyed and encouraged me in it. For me, that was singing in the school choir. She paid for private voice lessons. My senior year, I was invited to join a professional opera company. I didn't want to though...I wanted to be a teacher instead. The thing is, your child just wants to be normal. She doesn't want you or her friends to treat her differently. She just wants to be like everyone else...so help her. Help her to get back to feeling like her old self. Sit down and talk to her, and then move on. Get back to her old routines. IT'll be scary at first, but it will definitely help her.
RobinN
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What a very nice post.. I can't really add to that other than to welcome you to CWE.
This is a really safe spot to land, in the crazy making world you have found yourself in.
My daughter is 16 and has been dealing with this for the past 1.5 yrs.
We have tried four different meds, and one made her muscles ache so bad all she wanted to do was curl up in bed. She said the seizures were better than the way the meds made her feel.
Soon after she was on her first med, she had an episode that made her lose her memory for two months. The brain is really interesting if we think about it. However there is some great info here about neurofeedback. It can train our daughters to route the brain waves around the damaged areas. I hope to check it out soon. It just was given great kudos by the medical community. Lets just hope the insurance companies find that noteworthy.
I have taken my daughter out shopping when she is feeling rather low, because someone that has gone through it suggested that feelinng pretty was rather important, and can keep them going through the rough spots. Oh ... I also have found a great therapist that Rebecca sees once a week, so that she can tackle the demons that creep in during the seizures.
Hang in there... we are here to hold hands.
This is a really safe spot to land, in the crazy making world you have found yourself in.
My daughter is 16 and has been dealing with this for the past 1.5 yrs.
We have tried four different meds, and one made her muscles ache so bad all she wanted to do was curl up in bed. She said the seizures were better than the way the meds made her feel.
Soon after she was on her first med, she had an episode that made her lose her memory for two months. The brain is really interesting if we think about it. However there is some great info here about neurofeedback. It can train our daughters to route the brain waves around the damaged areas. I hope to check it out soon. It just was given great kudos by the medical community. Lets just hope the insurance companies find that noteworthy.
I have taken my daughter out shopping when she is feeling rather low, because someone that has gone through it suggested that feelinng pretty was rather important, and can keep them going through the rough spots. Oh ... I also have found a great therapist that Rebecca sees once a week, so that she can tackle the demons that creep in during the seizures.
Hang in there... we are here to hold hands.
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Hi Dee, welcome to the forum. :hello:
Topomax is also known as "dope-a-max" in the E community. Not everyone reacts to drugs the same way, but there are plenty who found Topomax to be completely numbing. It may not be the best choice for your daughter if she can't function normally thoughout the day.
Your daughter's seizure activity doesn't sound that severe (comparatively speaking). She might respond well to some non-drug alternatives like diet, CBT or EEG neurofeedback (see chart linked in my signature for more info). There are a lot of options out there to explore (including other AEDs/drugs).
Topomax is also known as "dope-a-max" in the E community. Not everyone reacts to drugs the same way, but there are plenty who found Topomax to be completely numbing. It may not be the best choice for your daughter if she can't function normally thoughout the day.
Your daughter's seizure activity doesn't sound that severe (comparatively speaking). She might respond well to some non-drug alternatives like diet, CBT or EEG neurofeedback (see chart linked in my signature for more info). There are a lot of options out there to explore (including other AEDs/drugs).
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:hello: Dee!
Welcome to CWE, and I do have to
*laugh* at Bernard's remark because
indeed some of the AED's do have
"not so nice names" for obvious reasons!
No further explanation needed!
Self-sufficient is the 'nickname'. Such
as Kep-RAGE for Keppra is another
example.
But I do wish to put an emphasis on
this .. and KEEP ThIS IN MIND AT ALL
TIMES ... for I post this repetitiously.
EVERY ONE OF US IS UNIQUE LIKE A
SNOWFLAKE - NO TWO OF US ARE ALIKE!
So while as difficult as it is to comprehend
when reading the forums,
threads, and boards all over the place
and especially the sig-lines of what
people are taking, and so forth. It can
be downright frustrating.
I ask that you erase that as "if" never existed!
It takes patience, trial and error, and
a lot of time - to find the perfect
medication or medications (aka
cocktails - a slang name for a person
taking more than one AED). It can
weary an individual, drain you out,
stress you, take a toll on you, and make
you want you to pull all your hair out.
But eventually in due time; the solution
comes to light.
Sometimes it can be surgery &
medication; and NOW they're looking at
Neurofeedback & AED in conjunction as
another form of treatment (and that's
put Bernard on cloud 9!)! And like
Bernard has posted before ... "the well
has not run dry yet."
So never give up, as trying it might be.
(((((((((( hugs ))))))))))))
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