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TOPIC TITLE: Frum people with epilepsy
Created On 2/15/05 10:33 AM
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tuna4ta
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2/19/06 10:39 PM
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HI NEWATTHIS
WHEN I WAS IN GR8 LAST YR I WENT TO ARE FAMILY DR WHO'S BEEN ARE PHISISION SINCE BEFORE I WAS BORN. SHE ASKED ME QUISTIONS & I ANSWERED THEM TRUTHFULLY. WHEN I GOT HOME MY MOTHER EXCLAIMED I WAS FAIKING MY SEIZUURES FOR ATTENTION. THE REASON WAS BECAUSE I HAD AMAZING CLASSMATES WHO ACTED AS THOUGH I WAS TH4E BEST THROUGH OUT THIS WHOLE THING( I FOUND OUT THIS YEAR MY PRINSIIPAL EXPLAINED IT ALL TO THEM).MY MOTHER KNEW SOMETHING WITH MY PRINSIPAL & GUESSED THAT SHE HAD TOLD THEM TO ACT THIS WAY ASIDE FROM THAT SHE HAD TO PAY FOR THE AMBULANCE & HOSPITAL BILL & ACUSED ME OF MAKING HER HAVE TO DO THIS .TO FINISH UPEVERY TIME I SEIZED I WAS TOLD TO STOP FAIKING NOT FAIR .
BECAUSE THIS I WAS SEIZING MORE THAN EVER AFTER SHE TOOK ME FOR A EEG SHE FOUND OUT EVREYTHING WAS NORMALL,BUT LATER MY SISTER IN GR12 SAY THE SEIZURES CAME & TOLD THE DR WHAT THEY LOOK LIKE, THE DR SAID THAT THEY WERE PSEIDO & TOTTALY STRESS RELATED. HE EXCLAIMED THE WHOLE THING & EVREYONE SAYS THEY'RE MISTAKEN FOR SEIZURES & THE PERSON IS USSALLY ACUSSED OF "FAIKING"
TO END THIS PERHAPS YOU SHOULD LOOK INTO IT PERHAPS ITS SOMETHING SIMIALER.


-------------------------
moshiach now!
 
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lizasharon
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6/9/06 5:49 PM
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I see that you are a frum person on the ketogenic diet. My niece just started it in canada and my sister needs some help. The nutrinitionist there only knows about treif products and they need to figure out substitutions..
 
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rebrelz
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7/26/06 9:49 PM
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goldy i agree with you people should be more educated about epilepsy. some people know nothing about and when they hear about just get flustered and all scared and don't even think that we meaning people with epilepsy can lead normal lives just like everyone else.
Did you find it hard to find a shidduch because of your epilepsy? since people are ignorant about it, it is very hard.
 
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rebrelz
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7/27/06 11:11 PM
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I was on dilantin for a while many years ago. It made my gums swell do find that it does that to you?
 
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rebrelz
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7/27/06 11:19 PM
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goldy,
I acctually read that article when you wrote it and last week found it and started reading it again.
I am still not married but hopfully the right one will come around that won't care about my epilepsy
and hopfully it will be soon. at the begining of your article I got a little haunted but then by the end i
got more reasured that, that is life and you have to do your part and Hashem runs the rest.
 
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miracle613
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11/5/06 7:09 PM
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Hi Jeff! I was looking at the Jewish Press, found this site- & it was just what I was looking for. I am 19 years old. I had epilepsy my entire life. (My seizures first started when I was a baby, because I was born with a tumor, but then I got surgery when I was 2) However, my siezures started up again when I was 13. They were getting worse & worse; I had MRIs, EEGS, PET scans until I finally had surgery again 2 years ago. I am on medication now, but I have gone to the hospital last month to get another EEG monitering because my doctor feared I was having seizures. But Baruch Hashem, the results were fine. I am still on medication though. Never in my life have I met another epileptic frum or not; it is so great to finally be able to talk(or in this case write) to someone who has shared a similar experiance as me.
-Daniella
 
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gamzu
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11/25/06 8:30 PM
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Heth,
I know you wrote about your 16 year old son a while ago, but it seems to me that if he is having Absence seuzures so frequently, the attention deficit is not really ADHD, but probably his inability to maintain a focus due to the seizing. It was explained to me that after every seizure, a person's sense of where they are and what is happening around them will be totally disrupted. they need the time to re-orient themselves, and memory is going to be affected. It is like someone turned off the TV, the show kept going, and when you turn the TV back on, you have to figure out what you missed and are expected to respond appropriately to the show as it is showing now, even though a chunk of your information is missing. I can't imagine how difficult that must be for a chid in school. Anyways, your son is older now, and if I had the choice of what to treat, I would focus on the seizures, hopefully the ADHD symptoms will resolve.
 
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gamzu
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11/26/06 11:55 PM
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Quote

Originally posted by: rebrelz
I was on dilantin for a while many years ago. It made my gums swell do find that it does that to you?


This is a common side effect of dilantin. Your doctor should have told you about this, but if you feel you are not getting adequate information you can do your own research or get to know your pharmacist. Also, your dentist can help treat this problem. It becomes a cost-benefit exercise as all the medications have some kind of side effects. It depends on what you can live with.
 
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goldy
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12/6/06 10:59 AM
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I see the site is moving again.
Chet, I could tell you a lot about petit mal and grandmal, since I had petite mal as a child
I'm a grandmother now and I went through a lot. There are quiet a few books about epilepsy. Also you should know that the medicine has to improve the quality of live , if it doesn't than you have to look for an other type of medicine. that is not easy, because every person is different, but that is the task of the docter.
be strong
goldy
 
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abbainmemphis
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12/13/06 8:21 PM
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I am glad that I started this group also. As others said, it is hard to find someone who will be accepting of the seizures. B"H my soon to be fiance was very understanding. B"H, I have been seizure free for app. 6 years now. I am still on medication and will be on for life because when they did my surgery, they could not remove the entire infected area.

Jeff
 
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miracle613
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2/7/07 10:02 AM
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I have been seizure free for almost 33 months (blee ayin harah) but I am still too scared to get behind the wheel. I still have this fear that I could seize....even though I had surgery. I have recurring dreams that I am having a seizure & it is so real that when I wake up, I feel like I really had one.
 
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miracle613
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2/7/07 10:06 AM
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Hey! well- I don't know what kind of medicine you're on. But I am on three different types of medicine, and according to my doctor it could have a major effect if I want to have children. If I take it while I'm pregnant(don't worry- I am not even dating...so I am defintely not pregnant!) they could have brain damage when they're born. But if I don't take it when I'm preganat, well...I'll have a seizure. So, my mom- who is an OBGYN is going to talk to this specialist to see if there is anything we can do because practically everybody in my shul wants me to start dating..but I have to know whether I am going to have to adopt or not.
 
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rebrelz
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3/11/07 10:18 PM
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it depends on what sort of medication you are on if it is dangerous to have children.
of course the less medication the better for you and the baby but my doctor said that its fine to be on the meidcation while pregnant.
 
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FORUMS > Neurology > Epilepsy / seizure disorder < Refresh >

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