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#1
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So many questions!!!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. |
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#2
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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.
__________________ "Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it will become your destiny." |
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#3
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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! |
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#4
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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.
__________________ "Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it will become your destiny." |
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#5
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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. |
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#6
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| Hi Dee, welcome to the forum. ![]() 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 anti-epileptic drugs/drugs).
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback |
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#7
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Dee!Welcome to CWE, and I do have to *laugh* at Bernard's remark because indeed some of the anti-epileptic drug'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 anti-epileptic drug). 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 & anti-epileptic drug 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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