Tegretol/newly diagnosed 15 year old daughter

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oceania_mom
New Member


Date Joined Feb 2005
Total Posts : 9
   Posted 2/2/2005 6:51 PM (GMT -7)   
Hi everyone,
 
My 15 year old daughter has just been diagnosed with epilepsy- she has been having simple partial, complex partial and absence seizures for the last few months.
She started on tegretol today.
 
I'm looking for hope that she can still have a good life and do the things she wants to do.  Epilepsy is a hard to take diagnosis for her and for me. She is a brilliant student and had lots of plans for the future.
Is it possible that she will remain intellectually unscathed? Have any of   you or your children been able to complete a higher education in spite of epilepsy?
 
And does anyone have any good things to say about Tegretol? The doctor wanted to put her on Epilim (sodium valproate) but I wanted to try Tegretol instead as what I've read suggests it  doesn't impede learning as much as some other drugs. I see there is a safer version of Tegretol called Trileptal but I'm not sure if I can access it (where I live the government  tends to fund just the cheapest drugs).
 
Thanks so much in advance!

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/2/2005 7:48 PM (GMT -7)   
HI OCeania!

I also have a 15 year old who was diagnosed last spring. Yes, kids can still do amazing things with epilepsy. Keep those dreams!! IT does indeed complicate life and challenge.

There are many extraordinary people who are said to have had seizures. Einstein and Edison among a long list. Van GOgh, Hannibal, Caesar, Dostoyevski(sp), Tony Coelho(American Congressman) to name just a few.
Do a google search and you will see many.....

You might ask the neuro if you have Trileptal where you are. It is an easier to tolerate med than Tegretol. Trileptal is great for many people. One thing with seizure meds is that everyone is different in how they tolerate, whether is gives control and has few side effects. Epilim can have some issues with a teen girl and some have poly cycstic ovary disease with it, but some do fine....We use Zonegran and it has been pretty good for my daughter. My son also did pretty well on it for awhile.

Hang in there! Best wishes to you and your daughter. I hope you find the right med for her

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/2/2005 8:54 PM (GMT -7)   

Here are some more famous people with epilepsy.

Julius Caesar (Roman Ruler)
* Napoleon-French military leader
*Molieve
*Ludwig van Beethoven
* Michelangelo Buonarroti
* Richard Burton
* Gustave Flaubert (French novelist)
* Edward Lear (English painter and poet)
*Mohammed the prophet
*Blaise Pascal (FrenchScientist,philosopher, and mathematician)
*Algernon Charles Swinburne (English poet)
* Alfred Nobel (founder of the Nobel prize awards)
* Neil Young (rock musician)
* Charles ****ins
* Hector Berlioz (French composer)
* Saint Paul the Apostle
* Mike Nolan (singer with Buck's Fizz)
* Tony Grieg (cricketer)
* Richard Jobson (model,presenter,singer with 'The Skids')
* Jonty Rhodes (cricketer)
* Tony Coelho (former congressman,author of the American Disabilities Act and Chair of the President's Committee on Employment of People with Disabilities)
* Max Clifford (publicist)
* Margaret McEleney (Won seven medals in 1996 Paralympic Games)
*Socrates(Philosopher)
* Agatha Christie
* Leo tolstoy
*Soren Kierkegaard
* Queen Boadicea
*Leonardo da Vinci
* Sister Wendy Beckett (art expert)
* Percy bysshe Shelly
* Clare Gorham (writer and TV presenter)
* Ian Curtis (singer with Joy Division

 

Just a partial list, I did not want to post it TOO long.


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 2/3/2005 8:37 AM (GMT -7)   
Hi, I just wanted to say that I know what your daughter is going through, I myself am 19, going on 20, and was diagnosed with tonic clonic seizures at age 15 although I've had them since i was 8. Don't think just because she's diagnosed with epilepsy she can't do everything she wants to! I am in college right now, in the nursing program and in a little over 2 years i hope to be a registered nurse. I guess the best thing for her maybe is to talk to someone else who's going or has gone through the same thing, I've never had that chance until i came here and it's really helped. I guess i think of my epilepsy as not something that holds me back but somethings that makes me unique and something i can overcome. Just tell your daughter to keep her chin up and not give up, Epilepsy is hard to have and some stigmas come with it but that doesn't mean you can't show people your better than that. Hope that helps! :)
~Jessica
p.s. i've been on 3 drugs and only one has altered my ability to learn, of course these are drugs for tonic clonic seizures so they're a bit different then what your daughter is taking. The only one I had a problem with is Topamax which we decided to call Stupidmax instead.
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


Graffixx_sk
Regular Member


Date Joined Sep 2004
Total Posts : 38
   Posted 2/3/2005 10:10 AM (GMT -7)   
I began taking Tegretol at the age of 12 when my seizures (Grand Mal) began and when I was 21 I was switched over to Tegretol XR which is an extended release form of the medication and appears to be a great deal easier on my liver/kidneys/etc.... Tegretol is good but the side effects can be pretty hard. Breakthrough seizures do occur but very rarely in my situation. Get a good Nuerologist/lots of sleep/good diet/work out whenever you can this will help a great deal from day to day.

As far as her education is concerned she will need support (epilepsy makes you look inside yourself and that unto itself can be a real downer), it was hard for me but I was not going to let epilepsy keep me away from my dreams. I wanted to practice art and I was told so many times from many different people that "college may not be for you with all the problems that you have" (I felt so stupid) and those people could not have been more wrong! I finished on the Deans list with a 3.5. Just like anyone else if she wants it she just has to go and get it....GIVING UP is not an option.

One other point of concern (FYI)- now this was a big thing with me when I was in High scooll/College...DRINKING...this should not be done. With my condition drinking is asking for trouble and as you get older it is made very available by people that mean you no harm but have no idea of the end results. This is where the responsibility factor comes into play and thats hard enough for kids (and adults) so let her know that you are her "constant" that is to say someone that is always there for her and communications will open and stay open which can only be a good thing.

Carpe Diem
Steve

oceania_mom
New Member


Date Joined Feb 2005
Total Posts : 9
   Posted 2/3/2005 3:28 PM (GMT -7)   

Thank you all so much for your help- I woke up this morning feeling very low and it was nice to come here and read your encouraging stories.

Kayakmom- thank you for the advice on medications :-)   I will ask about the Trileptal. I have read about Zonegran- do you use it on its own or in combination? If the Tegretol ends up controlling the partials but doesn't control the absences I might ask about Zonegran as an add on as I think the Epilim would be a last resort from what I have read about it....

Jen- I don't live in the USA so can't accept your kind offer of an information pack but thank you so much anyway :-)

Jessica- thank you for sharing your story- it helped alot! My daughter's name is also Jessica. Congratulations on following your dream in spite of the epilepsy and best wishes for the rest of your course at college.

Steve- thank you for sharing your story- congratulations on making the Dean's list- you give me so much hope!

Another question: my daughter is on her second day of tegretol and is laid low with dizziness so is having a quiet day on the sofa.... she is reading so her concentration is not too bad which is a good sign. Last night she was continuing to have seizures and she had a run of absences this morning around breakfast time.  Can anyone give me an idea when we would be likely to see an improvement in her seizures if the tegretol is going to work??? And is the dizziness likely to get better??

Thanks so much,

Jennifer

 

 

 

 


Post Edited (oceania_mon) : 2/3/2005 3:31:18 PM (GMT-7)


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/3/2005 5:34 PM (GMT -7)   
Hi Jennifer. Adjusting to anti convulsant drugs it tuff on the body. For me personally it took about 6 full weeks to not be dizzy, tired, moody and everything else that comes along with the package. Don't let her know all of these fears. Let her be and grow and fill every dream she has. It is a great damper on your spirit when you are dx'ed with e. Hopefully she will adjust well to the meds and have seizure control. I hope she does well and please keep us updated. Getting good sleep and keeping anxiety at low levels has really been a great help to me. Take care. Tracy
 


oceania_mom
New Member


Date Joined Feb 2005
Total Posts : 9
   Posted 2/3/2005 8:01 PM (GMT -7)   
Hey Tracy,

Thank you for your words of wisdom- you are so right that I need to keep my fears to myself- it is hard to stay positive and reassuring when I feel so worried but I hear you loud and clear.....

Today turned out not to be too bad in the end- the dizziness went away and my daughters seizures were much reduced. I can see by looking at her eyes that things are better- her pupils are a normal size instead of very dilated. She looks much more her old self and maybe there is a chance that she might be able to go back to school next week. I thought she might be off for weeks but maybe not!! She is so keen to get back to a normal life.....

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/3/2005 9:25 PM (GMT -7)   
HI Jennifer,

We do use Zonegran alone. It is a love it or hate it med, it seems. FOr some, like my children it has been the best choice. We have not seen as many side effects as with some others. We do not see total controll at first, but now we seem to have controlled her drops, myoclonic jerks and all nocturnals. I am worried that I may have seen some absence and this is a new thing. Hoping that another med adjustment will stem those as well.

Bes wishes for you and Jessica. It does take 4-6 weeks to get used to most of these meds!!

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/3/2005 10:37 PM (GMT -7)   
Oceana_mom
 
It sounds like the tegretol is controlling the seizures with minimal side effects. That's great.
If you were worried about possible negative side effects, I think you would have noticed them by now.
Not to rain on your parade but if inproperly diagnosed, this is what COULD happen. If my sister was perscribed tegretol in the first place instead of dilantin (overdose) and pheonobarb, This story below would not have happened. BTW I also have epilepsy and colitis and have a perfectly normal life.
 
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. All her life until about 10 yrs ago it was weekly, now monthly. 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)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


SonyaTx
Regular Member


Date Joined Sep 2004
Total Posts : 24
   Posted 2/4/2005 7:08 PM (GMT -7)   
We have a 13 yr old son who was diagnosed with Epilepsy last June. It took him a few months to get over being scared of the whole thing and it actually took till Sept for him to get seizure control. Since then hes had the seizure control and seems like hes back to his old self again doing typical boy things getting as dirty as possible,climbing tress and shooting the BB gun LOL.
School is a challenge for him because hes also ADHD his epilepsy is Frontal Lobe and ADHD and Frontal lobe epilepys are on the same part of the brain which I think makes learning even harder at times for him. His report card was good this first semester.
 
I think kids are so tough they can do anything they want to put their minds to doing and I am sure your daughter can go to college and do anything she wants to do.Some very famous people had epilepsy.
Once she gets past the shock of the diagnosis of E she will do better about the whole thing.
A bit of caution our son wanted to tell two of his friends and he did the one never said a word to anyone the other one told alot of people and soon some were making fun of him and pretending to have seizures.. Jr High kids can be so cruel. They finally quit doing it after he told them off.
 
Our son is on Trileptal its a great drug..
 
 
Sonya
 

Axa
New Member


Date Joined Mar 2005
Total Posts : 18
   Posted 3/20/2005 7:45 PM (GMT -7)   

I was taking Tegretol since I was 11 years old till I was 18 years old (together with Primidone). After first few weeks of side effects I haven't felt those two drugs in my organism. I always excelled in school, my memory was brilliant, so there is hope for your daughter too.

I've never had any special treatment in school: I wrote tests under the same circumstances as my school mates. Well, there was special treatment for me: during swimming.

After I was eighteen years old my E subsided for full twenty years. Well, two years ago seizures came back, unfortunaly.

 

Best

 

Axa


Axa
New Member


Date Joined Mar 2005
Total Posts : 18
   Posted 3/20/2005 7:49 PM (GMT -7)   
I forgot something: now I am taking Tegretol CR, newer form of the Tegretol which is much better since it works different in the body, so it is not such a tragedy if you forget to take a dose. Maybe it would be good if your daughter would try with this one. The chemical structure is the same, it has just different way of working. Talk with your daughter neuro about this option.

teensmom
New Member


Date Joined Jul 2005
Total Posts : 9
   Posted 7/11/2005 12:53 AM (GMT -7)   
Hi all, I'm new. I also have a 15 yr. old newly diagnosed. complex partials. She's currently on depakote & lamictal. memory problems are atrocious. Making school difficult. How can you test if you can't remember. Was always a good student before. Drs. are dragging their feet
about trying something new. Any suggestions????

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 7/12/2005 11:20 AM (GMT -7)   
Teensmom, I am so sorry that you are seeing all this with your daughter....

Does she have a 504 plan with school? I would talk to them about accomodations for test taking, tutoring, something to help her.
 
One thing they can do is modify tests to allow a word bank to help jog memory, have it non essay if that is an issue, fill in the blank, true and false etc....
 
It is so hard. Yes, doctors have seldom been in a hurry to help solve my son and daughter's problems....
 
Keep pushing for answers!
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