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Old 05-11-2002, 07:24 PM   #1
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Post Beths Mom

Hi Beths Mom

I have a couple questions I am sorta confused here hon... did beth start on depakote? and this is the med she had the problems with? or was it felbatol I tried both felbatol gave me panick attacks and a tingling all over it was pretty scarey for me.. they told me I was allergic to it but I am wondering now. Depakote I had some major dizzy spells and it wasn't controlling the seizures so they put me on my phenobarb which I have been on for the last 5 years now.. it's the only thing that really gives any kind of quality of life (not many seizures) the felbatol I really had a scare on though and am wondering if beth is on felbatol now. I am just a bit confused....


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Koko
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Old 05-11-2002, 10:05 PM   #2
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KoKo,
Beth was put on Depakote in 1979 when she was barely a year old...in those days they called it Valproic Acid, which was not too comforting...said a doctor in England had developed it for his daughter who had seizures and it was relatively new to this country.

In 1994 at the age of 16, Beth was changed to Felbatol as she had gained weight up to 250 lb. and the grand mal seizures were not being contained. We were told that Felbatol would be the wonder drug to solve all our problems...we think that the drug rep must have really sold our neurologist on the med. (we have had the same neurologist for Beth since she was
1 1/2 yr. old and feel we trust him). We were thrilled when the weight just started to roll off of Beth, so we left for the summer cottage in a remote area thinking that we were going to have a great summer.

Three months into Felbatol we began a roller-coaster ride of sorts. Beth was acting defiant, vomitting, twitching,and making weird hissing sounds like a crazed animal. I was afraid to go to sleep at night for fear she would be dead by the morning as she was barely keeping liquids down and did not want any food. I tried to call our neurologist but he was on vacation. I contacted a wellknown hospital in the area to get her in to see a neurologist, but was told I could only get in with our neurologist's referral. Finally I spoke with a woman who put me in touch with the head of the unit at the hospital and he agreed to see us. When we described all the weird things Beth was doing he calmly said they were typical side effects she should eventually get beyond...he was reassuring, but did nothing else to help...we figure he must have known what was coming down the road.
Just a week later our son at the dinner table noticed they were talking about Felbatol on the evening news saying that doctors were being told to take their patients off of Felbatol unless it was the only medication working for seizure control, as people had died using it. I cried and panicked...we packed our bags and headed home. Beth vomitted almost the whole way back...a nine hour trip.

We got in to see the neurologist and I told him he had not been there for us when we needed him. He agreed and said that he had not known how severe a drug it was, but that Beth would have to stay on it as withdrawing her would be far more dangerous at that point. He lined us up with a nutritionist and I found a caregiver at $250 a week to watch Beth so we could return to our teaching jobs. I cried on the way to work and on the way home each day, not sure if Beth would make it those first few months back. There was a rumor going through our town that we had taken our daughter in for some mysterious cosmetic surgery to lose her weight which I found really disturbing...I calmly called the woman at the heart of it to tell her I would appreciate her correcting the story as she did not have any idea the pain she was causing us to pass untrue rumors when we were so stressed...I doubt she ever forgot the phone call as I was more assertive than I have ever been in my life! Then came the night I hit rock bottom. My husband had listened and pitched in all he could to share the load, and I had not been to church enough to call our minister. So I got down on my knees and prayed to God that his will would be done with Beth...I realized that I was telling God to even take her if that was his plan. I had never given up anything totally to God's will before. The next day my husband said the caregiver called and asked what we had done different with Beth as she was so much better. He told her nothing, but I told him there had been something. From that day I have looked to the Lord for his will. And from that day on Beth continued to improve. I came to this message board and am reading as much as I can of the previous board to see if I can find answers as I honestly feel I am being led by the Lord to do so.
Beth is still on Felbatol, her weight has levelled out at 140. She is a picky eater, but fairly healthy and beautiful. We have added Neurontin to help her be able to have an appetite and also a sleeping pill week nights to help her get a full 8 hrs. on school nights.
I dread if we ever have to take her off the Felbatol. I will admit that Beth looks prettier and feel changing could influence that, but worse than that it was so hard getting her onto Felbatol that we are worried what could happen to her if we take her off. Our neurologist says there have been new meds that have come out that are promising, but we are at present trying to make the most of what we have her on. We are reluctant to try any more than two meds together at a time for seizure control and would prefer just one if possible.
Sorry, I know that this is a long answer to your question...to talk of it brings up even more tangents than I have mentioned...our lives have felt like a mini-series movie for some time now.
Thanks for caring to ask.
Beth's Mom

 
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Old 05-11-2002, 11:21 PM   #3
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Hi Beths Mom

Thank you for answering the questions of the Felbatol
Did they ever mention a plastic anemia? (not sure of the
spelling) Tegretol warns of this as well. I was taken
off the tegretol because I ended up with this.. It was
so slight it was easy to get me back to health. However,
I was pretty darn sick for a while. They put me on Felbatol
and told me it was a safe drug.. 2 months later after 3
major panick attacks they had found out this drug caused
the same thing. back to the emergency room and iv put in
me they weened me off the felbatol right then and there took
several days but they did it. I was put on Phenobarb and
trust It will be a long time before I change medications
again. I was never so scared in my life.. This anemia is
supposedly bone cancer? well I have slight damage in my right
hip from it, it also affected the kidneys but most of the damage
was in the hip. I was lucky I guess. at first they told
me I was bringing on the panick attacks they went as far
as putting me into a place LOL... I laugh now but only
at them they treated me like a beast for something they
did to me. I have gone through so many different things
with my epilepsy I have never let it get me down though
and after this last time of discrimination I am still
pretty upset. I have allways gone after my goals never
let people discourage me.. this last one through me into
another bout with depression. which I am fighting to
get through. Anyway thanks for taking some time with
me and telling me beths story I'll keep you and your
family in my prayers


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Koko
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Old 05-12-2002, 08:55 AM   #4
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KoKo,
I like your spunk!
Yes, aplastic anemia was the main thing mentioned by the neurologist when we went in expecting he would be taking Beth off of Felbatol. Instead she started having blood tests every other week. For Beth it was a piece of cake. She has such a high tolerance for pain so she never flinched when blood was taken...her goal was to get some stickers as a reward! When the technicians would see her in the waiting room they would select her before other kids because they knew she was an easy one to do...no crying or holding down for Beth. In fact she had to have four stitches above her eye in the emergency room from a fall a month ago and a friend said he had an employee who saw her there and she was actually singing to herself as they were sewing her up.
Eventually we did stop the blood tests as my husband and the neurologist were convinced she would show outward signs that would indicate problems and that she had been on the Felbatol long enough for that not to be a danger.
How horrible for you to be treated like an animal! So many people are frightened of people with seizures.
Seizures are in such a gray area when it comes to the proper thing to do that I think there must be great apprehension on the part of people in the medical field with the threat of malpractice constantly looming. That is one reason, when we went to trial against the delivering doctor for Beth, we were careful not to sue anyone but he and the hospital, as we did not want to interrupt the services good medical people were giving to others...though our lawyers would have loved to for the monetary outcome.It was not about the money as much as stopping a man who harmed us and was continuing to harm others (our current sitter for Beth went to the doctor when she was pregnant with twins...he told her to abort as she had cancer of the uterus...she went for a second opinion,he dumped her as a patient as his ego could not tolerate her defying his word, and she delivered a beautiful boy and girl who were our Homecoming King and Queen a couple of years ago and now are in college). But I am on a tangent. KoKo, I don't want to explain away their treatment of you but hope you will consider that they also have priorities in their lives that may not be helpful to your priorities of getting through these horrible side effects....not very comforting though. How I wish that epilepsy were more of a research priority. Makes me wish I were a smart Einstein who could open a research lab for solutions. Do you know that they still do not know exactly how or why Felbatol works for seizures?

Am spending Mother's Day checking out websites on the net that mention anything that was spoken of in the previous message board....
Too much water
Soy beans
Estrogen levels
Herbs
Diets
And Etc.
If I find anything of interest will open up new topics.
Hope you have a calm and wonderful day!
Beth's Mom


 
Old 05-12-2002, 09:19 AM   #5
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Hi Beths Mom

Am spending the day here at home as my night was terrible so I'll be on and off.. I really don't get upset at doctors anymore they know so much more now but not enough LOL.. I rarely get mad even.. The only thing I really want is to be able to go back to work and just be me.. of all those people what amazes me is I never got hurt we had guys fall off the train .. jen would have a seizure, on the train in a car someone would slam a window on hands etc.. I never got hurt cept for the one time on the platform I fell to my knees and I have water on both which can be painfull.. I took the risk like any other worker.. but I am the one that lost out this whole job thing really hurt me I don't think anyone will ever realize.. I loved my job.. I took care of that train and when I was there I NEVER thought of seizures it just made me happy. I have 23+ years in computer schooling off and on I was a tech for 5 years then my ex and I ran our own ISP for two years .. I love computers but I really loved the train. So when they used epilepsy after hiring me and knowing up front that I had it I was very much so let down. I may have gone off the subject and I am sorry..I just want everyone to keep living their lives and meet those goals they want.

Hope this post makes a little sense LOL I am so tired.. didn't sleep last night except for maybe 2 hours http://www.healthboards.com/ubb/dizzy.gif

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Koko

[This message has been edited by Kokopelli (edited 05-12-2002).]
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Old 05-12-2002, 11:23 AM   #6
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You two have brought tears to my eyes as I sit & read your posts. I have never felt so much support in my life. You 2 keep it up! Koko, I can only imagine the time your are going through right now & you have had a very rough time of things lately & have read your other posts. It sounds as if you are doing better on this board by just being able to vent a little & have a lot of understanding over here. I think you have had a big part in that Beth's mom so keep it up! Our Koko needs a lot from us right now & you have been a big help! Thank you! I will be on later when I have more time to sit & talk. Hubby is a little frustrated today & says I need out of this house (i just want to go back to bed) so he is going to make me go fishing with him! YUCK! I guess it will do me a little good to get out of this house though! Happy Mother's Day to all you moms out there!
Big Hugs!
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

[This message has been edited by Ksavage (edited 05-12-2002).]
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Old 05-19-2002, 11:53 AM   #7
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KoKo, KSavage and Others...
I have always said that hearing Wind Beneath My Wings makes me think of our Beth. You with seizures bear the heaviest burden, but inspire the rest of us who love you beyond belief. My husband and I both say that we could not be the compassionate teachers we are if not for having a daughter like Beth.
KoKo...I am sure you know that they cannot legally keep you from your job, but that you were running quite a risk. Beth's favorite thing is to be in the water, but she has nearly drown three times even with us close, so we are one on one with her. At school they tried to have her work at our local McDonald's...you have never seen a Mom as proud as I was to have her working there...until she had a seizure during their lunch hour and they said the liability was too great for her and their business.
Unfortunately, the possibility of seizures does limit you and you are not a limited person...as I told you before, I admire your spunk, but there may be restrictions to your freedom you will have to accept.
Great that you have computer experience...might be your calling. Have you thought of running a site that connects people to your knowledge of trains and links with other like sites? Remember Neil Young of Crosby, Stills, Nash and Young? He opened a model railroad for school and community groups to come to and charged them, all proceeds going to help a charity...he has a handicapped son he originally did it for to entertain him. Is it possible you could build a railroad in an outbuilding where you live or talk the railroad into doing a big model of their line that you could man and teach youngsters with your love for trains...then you could work on the trains, but in miniature.

KSavage...great you have a mate who is helping you, but going along fishing is good for you both! I hate to go in boats, but we have a jet boat at the cottage and I go in it with Beth because she loves riding in it with her Dad, and I worry sending just the two of them out on Lake Huron. I would love to just sleep and curl up with a magazine...not as ambitious these days, but make myself get out in life...but then again, I don't suffer the seizures you do...admire that you realize your husband's needs as your chief supporter.

Take care gals.
Beth's Mom


 
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