Teenage Epilepsy…. How We Dealt With

ItSome strategies …….Some thoughts

Its Frightening…..But We Survived

• My daughter was 12 when she had her first seizure

• Don’t Panic …..your child is already terrified

• Update your first aid …..that's for everyone in the family and house

practice what you will do during your child’s seizures to keep her/him safe

Family Life Changes…But We Coped

• at first everyone is too terrified to do much ..that's normal as you all learn to adjust

• BUT life must carry on…..there is school, sport, and other activities

• I had other kids that had needs too….we integrated her epilepsy into our lives

Epilepsy….Are You Sure?

• A question we asked over and over again

• Then the medics asked us lots of questions

– how does she seize?

– Which part of her moves?

– How does she know she is about to have a seizure

– Describe it for me please

…..all questions that we had no idea how to answer

The Medical Quagmire…You Need Help

• No matter what you read on google or what your ‘friends’ say….your child needs to see a doctor

• We (as in all the family) learned how to describe the seizures…

• It was stressful for my 12 year old to try and describe what was happening to her…she had no point of reference and she would get distressed

Managing Fear…For Everyone

• She was terrified

• We were just as terrified

But once we understood that her seizures were self-limiting (that means they stopped) we learned to manage them

She learned to throw herself into the recovery position in seconds

The Natural Cures….Heck We Tried Them All

• We have tried– naturopathy

– osteopathy

– herbalists

– heavy metal testing

……etc, etc, etc….

Just a waste of money really…..even though some of the alternative practitioners were sincerely very nice

The Good Doctor….Finally We Found One

• We struggled to get a good neurologist - took about 6 months. this is a doctor who specialises in the brain function

• You know you have a good one when that doctor talks to your child…and not just to you– he is sincerely interested in your child

– offers sensible advice

– is open and honest…always talking directly to your child and observing her/him

The Good Doctor…Usually Costs

• We pay for private care in a country where medical attention is largely free

• The first visit…we paid a lot because he carried out a thorough examination and did a lot of tests

It was a tense, stressful time but we were relieved to get someone who knew what to do

The Medication….Necessary ?

• Short answer…..Yes• The alternative …continued seizures

• The meds are also frightening but the good doctor was brilliant at finding the right meds for my daughter

• Side-effects…yes there are…but she learned to manage this too….now there are very few side effects

The Controlled Epileptic…Yes You Can

• Right Meds….took about 3 years of trialling different drugs and different doses

• We totally relied on our neurologist to guide us

• Finally we were seizure free …the med doses were just right to stop seizures

Those 3 Years of Trials….We Still Lived

Life does not stop………..the attitude of everyone is really important !

• School

• Sport

• Extracurricular activities

• Challenges

School….Get Them On Your Side

• Notify the school…then make sure they are educated about providing first aid

• Don’t let the school exclude your child from activities (within reason)..you want to keep your child as normal as possible

• Get your child’s friends around and teach them how to give first aid during a seizure

Other Activities….Of Course She Should

• Encourage your child into everything (within reason)

• Make sure she/he is prepared for anything

• Then let her/him go…and do all those things that teenagers do

Yes they will have seizures when you are not there…….it is hard

Your Child Will Grow Up …So Try To Let Go

• Stay at home alone……yes she did but we got a monitored medic alarm at home

• Go out alone ….yes she did but she had a medic alert bracelet

• Got a watch with alarms …so she took her meds on time

• Go on sleep overs ..yes she did but made sure the parents were able to cope

• Get a job …yes, first job at 15 years old

What She Couldn’t Do….Boo

• No alcohol/other drugs (not even legal prescription drugs unless we checked first)

– we had to educate our daughter on the fact that epilepsy drugs were enough for her to cope with

– we had to be proactive with other medical staff ..stand in front of them if you have to…make sure they know what they are doing (sadly some don’t)

– a social drink from time to time is OK…but learn moderation if you want to stay well

High School….Yes She Did Do Well

She rowed from the time she was 12 years old till she was 16 years old…..top high school rower with a load of medals

She travelled overseas with groups of friends

She passed all her high school exams

She got entry into University

She graduated ..

High School…Yes it was stressful

• She had seizures all through her high school years

• She had – school support for exams

– rowing made her super fit .. that made a huge difference to her health

– watched what she ate and drank

– made sure she got plenty of sleep

And took her meds on time ….

University…..She is in her last year

• She is a controlled epileptic…no seizures for 6 years

• We have her meds poked everywhere we, and she, goes

• We have found vitamintherapy does help

But still rely on good diet, exercise and sleepShe takes her meds on timeWe still have the good doctor

Independence ….Yes She Can

• She has learned to manage her health herself…………… She goes off to see the good doctor on her own these days

• Step in when its needed …but sometimes you might have to shove them out the door….fear can cripple your child if you let it

The Working Teenager….Absolutely

• She has been– a waitress (quite a number of times - not one of her

best jobs)– a retail person (selling everything from fridges to

make-up)– a bee keeper (yes, you read that correctly)

But she has also volunteered in lots of positions, helping out ….

She has learned not to discuss her epilepsy with her prospective employers…she tells them later

Travel Abroad….Of Course You Can

• She travelled alone to England at 16 years old…scary for us all as she was still fitting

• Lately she has travelled to

Cambodia and Thailand

And Yes …she packs as much meds as she does clothes

Best confidence boost ever –she loves to travel

Has She Had Scares…..Sadly Yes

• You can’t always be with your child 24/7…

• Epilepsy…don’t let it be the only defining thing about her life

We are constantly and quietly aware of her health….but we don’t obsess about it

Ready for Life Ahead…She Can’t Wait

• Last year of university…..she has done 2 bachelor degrees conjointly– her meds do not slow her down

– she has finally got her driver’s license and she has a little car

– her latest boyfriend looks

like he might be permanent

A long 9 years …

Epilespy….it has not gone away

• Its meds until further notice

• We hope for a cure …still

• ♥♥ BUT….every seizure free day is a good day for all of us ♥♥

The End&

Thank You