Place Your Advertisement Here. All ad revenues support the mission of the Epilepsy Therapy Project.
 

Welcome to the redesigned epilepsy.com

It is now easier and faster than ever to access news, articles and community content. With less clutter and an improved navigation system, your favorite content is now only a click away.

The new features include:

  • Streamlined design with less clutter to promote important content and sections
  • New slider masthead
  • New horizontal menu across the site to ease top level navigation
  • Re-designed content pages that are easier to navigate
  • Overall new, fresh look!

Place Your Advertisement Here

Take control of your epilepsy and seizures. Seizure management has never been easier.

TAKE CONTROL TODAY

Sign up for our Newsletter!



Not Child's Play

Dealing with a child with epilepsy can sometimes be a full-time job. But every worker gets some time off. And children have a natural need for independence.

So how do responsible parents get a respite while protecting their children and still giving them room to grow? Finding the right care-givers, educating them and communicating well with them are keys, say experts and parents who are faced with this dilemma.

Edna Kane-Williams, vice-president for programs and research at the Epilepsy Foundation, said making others aware of the problem and the worst-case scenario is important.

?I think is one of the key items is making sure the care-giver is aware of first aid procedures,? she said. ?And then what is normal for your child in terms of seizures, the length, the duration, what to look out for, are there any symptoms they can watch for that might signal that a seizure is about to occur.?

But Kane-Williams said it was important not to go overboard. She said giving appropriate weight and seriousness to any epileptic condition is fundamental.

?It doesn?t necessarily entail calling an ambulance at the first outset.?

Mary Ann Heinsman of Cape Girardeau , Mo., has a son Tim, 6, who has partial, absence and generalized seizures. A recent arrival in her town, Heinsman said that she goes by her ?gut feeling? when dealing with new care-givers.

?I?ve found out that either some people are totally freaked out or some people on the other extreme are just too confident,? she said.

She encountered the first example when she recently took her son to Sunday school.

?It was a new teacher and she just got freaked out and she was overwhelmed and I just said ?Today I need to stay with him. Even though I don?t think he?s going to have a seizure, I need to stay to alleviate her fears.? ?

At the opposite end of the spectrum was Tim?s new T-ball coach.

?I started to tell him about Tim?s condition and how he would be going on medication and I got this ?Oh, that?s fine. I know what to do. I?m the safety officer at work. He?ll be OK.? And I thought, ?But he didn?t ask me what kind of seizures does your son have? What do I need to look for?? And I thought, ?OK, I need to be here.? ?

Walking a Fine Line

It?s the same fine line that needs walking when looking for day-care centers, Heinsman said.

?I guess what I look for is if they are willing to find out more about this condition and are they willing to help and ask me more questions about it. If they act like it?s going to be a big deal to accommodate us, then I know it?s not a good fit.?

Heinsman said that the nurse at Tim?s public school has been very supportive, talking to her son and instituting a ?buddy system? for Tim and other children with epilepsy.

?She said it?s important to educate your son what to do when he has a seizure,? Heinsman said. ?Tell him if he?s not feeling right to get a buddy and come to see her and she would take care of him. But also if he has a seizure on the way, there would be someone to go get help.?

Recently Tim showed up with a buddy at the nurse?s office, complaining that he was feeling off-kilter. This time it was a false alarm.

?She told me, ?I think it was from eating too much pizza at lunch.? ?

As children get older, new problems emerge.

Barb Zorzie, of North East, Pa., has a daughter, Leila, 11, who has simple and complex partial seizures. The problem has been getting worse since it began three years ago.

?What she?s doing now is clustering,? Zorzie said. ?This last year has been like a train wreck.?

But even as the medical problems grow, Zorzie, a nurse, is aware that her daughter needs to grow independent like other children nearing the teen years.

?What do you do with them?,? Zorzie asked. ?It?s a very important thing for them to get used to being alone. She?s getting a little tired of going to grandma?s.?

Zorzie said that she has met subtle resistance from parents when Leila has gone to visit friends.

?People who know she has seizures just aren?t really comfortable being in charge of her,? Zorzie said. ?It?s ?What do we do if . . . what if we do if?? They don?t want to be responsible for medications and I think it?s a lot to ask another parent unless you?ve very, very close. When they think of seizures, they think of grand mals. They don?t think of simple ones, little ones and it scares people.?

An especially difficult problem is that standard of pre-teenage girl activity - the sleepover. Zorzie said that one of the Leila?s seizure triggers is lack of sleep.

?That?s tough. It?s hard call. Do you let them go when you know the next day is going to be filled with seizures??

It?s also become somewhat of a moral dilemma for Zorzie: To tell or not to tell the other parents.

?The last time I said to Leila, ?Shall I talk to Kathy?s mom or not? What do you want me to do?? I said, ?I?m leaving this in your hands.? And she said ?I think maybe not. Let?s see how it goes.?

?Now is that deceitful? Some people would say that?s deceitful to let a child who has seizures stay in a house without telling. She probably would never get invited back there if they found out I did that.?

Zorzie has discovered that like so many things about epilepsy, there is no one correct answer.

?I think it?s important for Leila to spend some time away from me. We spend an awful lot of time together. She needs that little bit of independence. It?s truly a balancing act.?


Place Your Advertisement Here

Title Posted
Epileptic Seizure Monitor Alarm System  
onemarvy
Are these normal migraine symptoms or is there something more to it?  
xtheotherside
5 year old worsening seizures. Pls help???  
TIM_C28
Trileptal dosage  
myejk
SEN and epilepsy  
Kim Norris
possible non convulsive epilepticus?  
rayraykay
Fight with the sidewalk  
jasssmit
Focal activity followed by generalized activity but no epilepsy  
BendyPianist
Self-Management of Medication  
columbia.epilepsy.study
Feeling Like a Human Guinea Pig  
christopherpaul
View all Forums

Title Page Views
my.epilepsy.com Updates  
epi_help
topamax and weight loss  
alexia mom
kepra  
brian mattingly
Possible cure for absence seizures  
pdl1
How exactly do aura's feel  
WendyBendy
Sexual Side Effects  
George R
MEDICAL ALERT I.D.'s  
picnupthepcs
Over 40 Different Types Of Seizures - Revised  
spiz
electrical shock in head?  
Maggie
Weight Gain and Depakote  
galinda
View all Forums

Title Posted
Epilepsy Pipeline Update Conference  
bryan_farley
my partial complex seizures  
Zanna1211
The Sunday Dreads  
johnverling
Giant Stuffed Animals For The Toddlers  
zacharysmith
Frederick's of Hollywood Announces the "Hollywood Love Story Contest" Valentine's Day  
cn-lightings
Seizures and medical marijuana  
seizureprone134
From muscle problems to seizures in 6 weeks or less  
ArizonaAbby
Speech at Epilepsy Pipeline Update Conference -2012  
dayna
The Doors.  
BowlofMush
marijuana  
ccraven
View all Blogs

Title Page Views
my partial complex seizures  
Zanna1211
Topomax... The Dreaded.........  
Dr Jason
Brain Zaps, tics & twitches  
JudiS
How can you tell if a sleep seizure happens?  
epl_controller
Feeling Sick  
JBJ1984
side effects of phenobarb.  
pksmom
Tegretol XR and ANXIETY meds  
Butterflygrl
TYLENOL, AEDs & SEIZURES  
cmscribbles
Nonepileptic "Events" vs. "Seizures"  
teft
newborn seizure  
Sunny_80
View all Blogs

Title Posted
Had the worse seizure of my life last night! Complex Partial  
jlamont
Self-Management of Medication  
columbia.epilepsy.study
Dravet Spectrum Disorder  
mytboy
Diving with eplilepsy  
p59
Moms of epileptic toddlers  
Xaviersmom2
Autism  
Aaron Chan
brain surgery  
jen020309
People in their 20's with epilepsy  
Mandy911
TEAM ETP  
krisj
24yr old male  
Dave24
View all Groups

Title Posted
My Story - Still Don't Know What it Means  
arobertshaw85
Help me plz. I can't go on like this  
Lindsea
For my daughter  
britni1780
Why can't I find out what is going on with me?  
dgreer27
nightime seizure  
ishaq
my grandchild with possible panayiotopolous syndrome  
krys
Please Read and Help  
WALLIGAT0R
Hello. I'm new to the forum  
Tom S.
Maxx  
MDS2006
Lyme Disease as a cause for seizures  
ssidah
View all Stories