Over medication at an early age

[RanMan]

Parents, Please watch that you child with epilepsy is seen by a NEUROLOGIST or EPILEPTOLOGIST, not just your family doc. who may not be to familiar in this field.

I have an interesting story about my 40 year old sister who was dx'd with EP when she was 13 yrs old.
At that time she didn't see a specialist, but instead, saw her family doc who over prescribed pheonobarb and dilantin, so much that it became toxic in her system and caused brain damage after long term use.

It (the grande mal seizure) was triggered when she got her first menstrual cycle.(puberty)
At that time, my mother took her to the family doc. but instead of getting a second opinion, she let the family doc. over medicate her.
The meds were so powerful that she has never advanced past age 13. Now she's 40 and has never worked a day in her life or played any sports and couldn't even complete high school or have a family because she was constantly in a fog and everything is "TOO STRESSFUL".

I blame my mother for most of her problems because every time my mother takes her to see a doc. if she doesn't hear what SHE wants, she takes her to another doc. because she doesn't want her daughter to be labeled as having a disability. I don't have anything to do with my mother because of what she's done to my sister.(Kelly).

Now my sister (Kelly) is so messed up that she barely regognizes me, She tried some voluteer work at the hospital and I happened to be in there one day to visit a friend and when I called out to her she didn't know who I was at first for a few minutes. When she speaks (which is rare) she looks through you. not at you. You have to speak to her like she is a 13 year old or she can't understand. She can't complete a setance without messing it up.

Her gait and co-ordination is so bad that she is always holding on to something and when she walks she always looks like she's going to fall.
She's a walking vegitable. What kind of a life is that.

My mother thinks that Doctors are stupid and just like to use big words.
Thank god I was dx'd after I had moved out or that might have happened to me.

All this from being over medicated.
And she still has several grand-mal seizures a week.
So this is what can happen if you're not careful and the meds go toxic in you're body.

I'm not looking for any help for her, she is permantley damaged and I'm just venting (pissed off)

Randy (ontario)

[Bernard]

I'm so sorry to hear about your sister Randy. Life is not fair and sometimes its downright cruel.

Peace.

[Bernard]

Related topic: AEDs not necessary in early stages of epilepy

[POSITIVEPERSON]

Randy I am sorry to hear about your sister . Once I became allergic to dilantin when I was 11 yrs old, the gp refused to see me. I had to go to a nuero . Since I moved to Portland Oregon , I haven't seen any nueros or epilpetolgists no insurance . So after I became allergic to tegretol I switched to a homeopathy Dr and have done so much better.


I am now trying Dr John from brian chats boards diet with the homeopathy as I wean off the mysoline. I haven't felt this good in years.....

Wishing you a seizure free life
Riva

[Stacy]

Hi Randy,

I'm sorry to hear about your sister also. I too am of the opinion that SOME Dr's are stupid, and that all they know to tell you is what they learned in medical school. "She's still not doing well? Up her medication", one doctor said to a nurse about me.

I am also of the opinion that no one knows my body better than I do, and after MUCH research and backtracking, I have come closer to figuring out the when, where, why and how of my epilepsy. I think for now, that the Dilantin helps. I also take a hormone called, "Pregneneolone" every morning when I first get out of the REM sleep phase. My family doctor (whom I've known since I was 12) actually helped me through the process of a food, activity, and seizure diary. When I took my calendar and my diary (noting that I was having my sets of seizures 2 days before or after my period, and 1 day after a bunch of sugar) I sarcastically yelled at him saying, "I NEED ESTROGEN! "ThIS IS HORMONAL"!

He agreed that it was certainly worth looking into further, and gave me directions on how to use pregneneolone. So far, as long as I stay out of the sugar, get exercise, sleep and lower my stress, I think the pregnenolone actually helps. I only take 10mg/moring the first time I was up.

They say the body can heal itself. Is it possible that your sister's epilepsy is also hormonal and that it could be attached to the blood sugar in the monthly cycle? Is she anemic? I have a bit of that problem. My favorite line from a Chinese Dr, "It's all there in the brain. Everything since you were born. You just have to find it." Good Luck to your sister. My heart goes out to her.

[RanMan]

Hi Randy,

I'm sorry to hear about your sister also. I too am of the opinion that SOME Dr's are stupid, and that all they know to tell you is what they learned in medical school. "She's still not doing well? Up her medication", one doctor said to a nurse about me.

I am also of the opinion that no one knows my body better than I do, and after MUCH research and backtracking, I have come closer to figuring out the when, where, why and how of my epilepsy. I think for now, that the Dilantin helps. I also take a hormone called, "Pregneneolone" every morning when I first get out of the REM sleep phase. My family doctor (whom I've known since I was 12) actually helped me through the process of a food, activity, and seizure diary. When I took my calendar and my diary (noting that I was having my sets of seizures 2 days before or after my period, and 1 day after a bunch of sugar) I sarcastically yelled at him saying, "I NEED ESTROGEN! "ThIS IS HORMONAL"!

He agreed that it was certainly worth looking into further, and gave me directions on how to use pregneneolone. So far, as long as I stay out of the sugar, get exercise, sleep and lower my stress, I think the pregnenolone actually helps. I only take 10mg/moring the first time I was up.

They say the body can heal itself. Is it possible that your sister's epilepsy is also hormonal and that it could be attached to the blood sugar in the monthly cycle? Is she anemic? I have a bit of that problem. My favorite line from a Chinese Dr, "It's all there in the brain. Everything since you were born. You just have to find it." Good Luck to your sister. My heart goes out to her.

Hi Stacy,
My sister's Epilepsy is genetic (as is mine) and not hormonal and is not connected with her blood sugar and she is not anemic.

She's had this since she was 13 and now 43 and still having trouble.
I was too young at the time to see what was going on but my mother took her to so many different specialists with so many differing opinions, all perscribed different meds and my mother thought that was O-Kay, as long as she(mother) heard what she wanted and didn't seem to give a sh-- about my sister.

Now my sister has so much brain damage that she is now retarded.
My own Epilepsy didn't show up until I was 21 but by then I was on my own and my mother didn't have a chance to screw me up and now I'm the one living a fairly nomal life.

This is why I think that seeing too many Drs. can be dangerous. Stick with one neurologist. or epileptologist. so they can get to know you really well and your medical needs.

[CQ:)]

Hi RanMan

I'm sorry to hear about your sister. I was just wondering does she still live with your parents or in a special home? If you don't think it's any of my business you don't need to tell me .

I agree with you when you said to stick with one neuroligist or epileptologist. I have always prefered to go to my Neurologist when I am taking too many mild seizures or any seizures that are different to others I have had in the past. Afterall that is what he is there for & most of the time if I told my GP that I took a mild seizure they'd just tell me to see the neur anyway lol.

I also think sometimes the drs do have to try people with epilepsy on a diiferent lot of meds before they can control their epilepsy because everyone reacts to meds differently. In the end it is all guess work.

[Bernard]

In the end it is all guess work.

Hopefully, it's educated guesses!

[CQ:)]

Hopefully, it's educated guesses!

LOL, We would like to think so.

[Stacy]

Just FYI... my epilepsy is hormonal and also hereditary.... My mother had it, as did my uncle. It skipped my grandmother but her mother had it. Apparently it traces back to Martha Custis Washington (wife of George)... but this is hearsay and I have not delved into my geneology that far for concrete proof.

My poor doc is afraid to touch me, thinking he'll screw something up worse. But he is willing to work with me to find a fix for my own body. I've seen several Neurologists, but they can't seem to agree on what to do. SHeesh.. what a pain.

I am terribly sorry to hear about your sister. Is it possible that since the brain can heal itself that she might find something to help?

[angel]

Just FYI... my epilepsy is hormonal and also hereditary.... My mother had it, as did my uncle. It skipped my grandmother but her mother had it. Apparently it traces back to Martha Custis Washington (wife of George)... but this is hearsay and I have not delved into my geneology that far for concrete proof.

My poor doc is afraid to touch me, thinking he'll screw something up worse. But he is willing to work with me to find a fix for my own body. I've seen several Neurologists, but they can't seem to agree on what to do. SHeesh.. what a pain.

I am terribly sorry to hear about your sister. Is it possible that since the brain can heal itself that she might find something to help?

mine is hereditary also my grandma & my dad have the same seizures " or as close to mine" seizures started for me with my first mensteral cycle. I was put on phenabarbatol then dilantin I had really bad side effects two both.. my parents took me off the meds and ive not taken any until just nine months ago ... I was 13 years old im 38 now they can and do mess with your ability to learn ... I quit school in the 6 th grade... most the time I was in the hosptial because of bad kidney infections and high fevers... So, i feel for your sister.. I could never learn to spell for some reason it just never clicked. often ive wondered if may be it was from the meds ... because I when was going to school had a's and b's good grades... Ive tried to take my Ged can pass everything but the writing.. one thing ive learned is that you can always use spell checker I was a marketing executive for a real estate office until the market crashed .. ...

[angel]

Hi Stacy,
My sister's Epilepsy is genetic (as is mine) and not hormonal and is not connected with her blood sugar and she is not anemic.

She's had this since she was 13 and now 43 and still having trouble.
I was too young at the time to see what was going on but my mother took her to so many different specialists with so many differing opinions, all perscribed different meds and my mother thought that was O-Kay, as long as she(mother) heard what she wanted and didn't seem to give a sh-- about my sister.

Now my sister has so much brain damage that she is now retarded.
My own Epilepsy didn't show up until I was 21 but by then I was on my own and my mother didn't have a chance to screw me up and now I'm the one living a fairly nomal life.

This is why I think that seeing too many Drs. can be dangerous. Stick with one neurologist. or epileptologist. so they can get to know you really well and your medical needs.

my mother had to take me to many differrent doctors for bad kidney high fevers up to 105 most the time..started at age three.... I think some parents just love their kids so much they try to listen too everything the doctors are saying like its words coming from jesus himself beause they dont understand that doctors can be wrong... I dont know your mom but try to put yourself in her shoes think about how all this must make her feel..

for your sister Its nice to see that she has a brother who loves her so much & is willing to take care of her the way you do.


I agree with you

"This is why I think that seeing too many Drs. can be dangerous. Stick with one neurologist. or epileptologist. so they can get to know you really well and your medical needs"

Love
angel

[RobinN]

"This is why I think that seeing too many Drs. can be dangerous. Stick with one neurologist. or epileptologist. so they can get to know you really well and your medical needs"

Sorry I overheard this conversation, and I have to say I disagree with a passion.
There are far too many MD's working today that do not want to get to know you. One more file in the rack is about all they see. They don't compare blood work, or seem interested in your calendar of events.
I feel knowledge is the best form of help you can give a loved one. As a mom I will continue to search, if necessary, to find a doctor that is willing to "work" with me. Luckily I have a wonderful neurologist at the moment, but she is not knowledgeable about the nutritional side of the story.

I am sorry RanMan that you have such harsh memories of your mothers care of your sister. Without the internet I would be in the dark, and that is a scary place to be. Try to be gentle, as most parents attempt to do the best they can with what they have been given.

[brain]

Well - I am 50/50 on this topic here. This
is not generalized to the Neurology field but
as the Medical Field as a whole:

I've had Doctors who were/are very caring and then
I've had those who were just the opposite.

[angel]

Sorry I overheard this conversation, and I have to say I disagree with a passion.
There are far too many MD's working today that do not want to get to know you. One more file in the rack is about all they see. They don't compare blood work, or seem interested in your calendar of events.
I feel knowledge is the best form of help you can give a loved one. As a mom I will continue to search, if necessary, to find a doctor that is willing to "work" with me. Luckily I have a wonderful neurologist at the moment, but she is not knowledgeable about the nutritional side of the story.

I am sorry RanMan that you have such harsh memories of your mothers care of your sister. Without the internet I would be in the dark, and that is a scary place to be. Try to be gentle, as most parents attempt to do the best they can with what they have been given.

Robin,
the reason I have to agree is so the doctors THAT your comfortable with can get to know you better that way they can help you better .... with my kidneys my parents took me to every urologist they could because at first no one could figure out what was wrong soon after they found out i had vur .... I had kidney surgery when i was three or four they couldnt finish the surgery I guess from what my mom says because i was to little? how un nessary is that lol anyways, so had to suffer until i was 17 when i found a urologist who said, hey... i can fix your problem woooo hoooo! what a wait.. my family didnt have alot of money so I spent sometime sick in hosptials with kidney infections until this new doctor ... I had surgery i think i was 19 or 20 he put in a valve implant for vur...

thats why I try to stick to the same doctors... good ones are hard to find

Love angel

[RobinN]

Researchers have called for urgent studies into the long-term safety of newer antiepileptic drugs after discovering that the number given to children has increased significantly over recent years, reports the June issue of British Journal of Clinical Pharmacology.


"However, these newer anti-epileptic drugs are subject to fewer licensing restrictions because there is more evidence about their benefits, gathered from controlled trials, than their more traditional counterparts. As new safety data emerges, restrictions in prescribing may be implemented."


"This means that clinicians often have to rely on their experience and scale down adult drugs for paediatric use, which is widely regarded as most unsatisfactory.

http://www.medicalnewstoday.com/articles/73611.php