Epilepsy

**pureanger** · 12-27-2001, 06:14 AM

Just wanted to know if anyone out there has delt with this and can give me some advice. MY five year old son has just been diagnosed with it and I need some help. So I thought I would turn to my family....Just in time for the holidays

**gixxerboy1** · 12-27-2001, 09:27 AM

i asked my gf and she's a specail-ed teacher and some of her kids have it.Just follow the doctors directions with the meds.Most of the kids who have problems is cause their parents stop giving them the meds cause they think they are fine. She said a sign for a sezier is if the child starts staring off in space. Our thoughtsa are with you bro im sure he will be fine

**TNT** · 12-27-2001, 11:14 AM

Originally posted by pureanger
Just wanted to know if anyone out there has delt with this and can give me some advice. MY five year old son has just been diagnosed with it and I need some help. So I thought I would turn to my family....Just in time for the holidays

Bro, you've done the right thing by reaching out, and you can know that our thoughts are with you.

The diagnosis of any chronic condition can be a heavy-duty factor in changing your life - you've just become more than a parent, you've become a caregiver and an advocate. You're a caregiver insofar as your son is going to have episodes in his life that will require special attention, and an advocate insofar as educating both yourself and others with regard to his condition and preventing others from crapping on him because they're too ignorant to learn anything.

There are two immediate resources you should check out. One is the Epilepsy Foundation of America, and the other is Epilepsy Ontario, which has a great set of FAQ's that will tell you what you need to know (yes, the Canucks have given us something great other than the Kids in the Hall).

The most important thing to remember, especially at this stage of the game, is to remember that you are not alone. There are lots of other parents who are in the same position, facing the same challeneges, and you can be of mutual support to each other. At the same time, be careful - when there is any chronic condition involved, some people have their own way of thinking, and there is often too much of a politic in shoving someone's views down others' throats. (In the ADD world, we often find it with the pro-Ritalin versus the anti-Ritalin crowds.)

Gixxerboy has some good advice - it's important to make sure your son takes his medications as directed. At this early stage of the game, his doctors may be trying out different meds to find the right one and trying to find the right dosages (that will prevent seizures without zonking him out). Remember that if he has any side effects from his meds, call the doctor before discontinuing them - many epilepsy drugs have to be titrated (tapered) up and down, and discontinuing a drug suddenly could have side effects.

Also, make sure you are comfortable with his doctors. If you haven't done so, find a good specialist now. If you have decent health insurance, your kid doesn't deserve an adequate neurologist, he deserves the best damn neurologist you can find. Especially now, when he has a long life ahead of him and parents who are ready to take the right steps at the early stage of the game.

And take care of you. Realize that his diagnosis is not your fault (or his mom's) in any way, and make sure you and his mom take time for yourselves. The technical term for this is respite, and it's more important than you think. In any chronic situation, the caregiver is far more likely to experience burn-out than the patient or the person with the condition, so make sure you continue to take some time to get to the gym or do other things to maintain your own sanity. It will give you the strength and energy to continue on, and will help normalize the situation. And normalization is an important part of the process, especially as your kid continues to grow up - he is special, but has the same needs as any other five-year-old kid when it comes to everything from having fun to socializing.

When you say that this happened "just in time for the holidays," I sense a little bit of anger. Guess what, Pure . . . that's normal. And healthy. (The real bitch is that you may not be sure what or who to be angry at.) There's no way of making that easier, but realize that you've just gotten a very unplanned jumpstart in personal growth. Hard as it is to believe, you will come out a more complete person for all of this. And, like I said, you are not alone - if you are in an area where there is a support group, especially for parents, get your ass to one. It will help strengthen you through the process.

Finally, and this is not meant to sound negative although it might -don't wallow. (And don't hang out with other parents of epileptic kids who wallow.) If you find that some of the people you talk to don't share your sense of concern or caring, tough shit. He's not their kid we're talking about, he's yours. And there is nothing you'll be able to do about the fact that there are lots of assholes in the world. My advice is to adopt the mindset of the great philosopher Robin Williams, who said, "Joke 'em if they can't take a fuck." It's the half full-versus-half empty glass of water: You can see this only for the negatives, or you can focus on the positives . . . The latter is much healthier, and you'll see that behind any difficulties, you've got a great kid.

And keep us informed of how it goes. Behind all of the fluff you sometimes find here, there are folks on this board that can help keep you going when the shit hits the fan. Like I said, we're with you on this one.

**Mallet** · 12-27-2001, 12:30 PM

What meds have they prescribed?

Barbatol?

when the meds are taken according to the doc, seizer's are controlled very well. I've seen my friend go years without a seizer

And only then because he forgot to take his meds.

Some young children do experience GMseizers which are seldom and they eventually go away. but if he's been diagnosed with
"epilepsy" that meens it is unknown what causes the seizers

My friend carries on a normal life( work , school, sports etc...)
but he doesn't drive?

Our sympathy goes out to you brother!

If there is anything specific you want to know, I'll pass it on to my friend!

Peace.

Mallet

**Tobey** · 12-27-2001, 03:19 PM

From the onset of a near fatal accident as a child I had problems with seziers. I was lucky for it has been almost 20 years since I last had one. The doctors seemed to think that the cause of the sezies had finnally healed. ( long indepth story). Anyway 3 years ago my son was dignosed with a pedamaul seziers. They are very mild and fortunealy for us Joshua is no longer on any type of medication at all for his seizure disorder. There are several forms of seziers that one can have and the good thing in your case Pure A is that it happened to your son at such an earlier age. This sounds cruel and I 'm sorry but the simple fact is that most children who were dignosed with a sezier disorder at a very early age have a much better chance of out growing it and not have any problems with seziers at all later on in life. I hope this holds true for your son as well.
Ask your doctor about any organizations near by that catter to this type of situtation. TNT made some valid points as this effects your whole family, not mearrily just your son. My brothers grew up actually resenting me for the attention that was heaped onto me as a child. Of course with time comes maturity and these feelings have changed but it seems a good anaology to your problem at hand. Good luck. I hope all goes well for you and your little boy.
Tobey

**Tobey** · 12-27-2001, 04:14 PM

Phenobarbital is a very toxic narcotic. When Ias on it I took 3 days for my body to get use to it. I was sick as hell, and shaking like a back alley herion addict. Believe me you want to try as least toxic drugs as you can find. Other meds that I would be leary of is valiumes,
Dialantane ( Causes servere mood swings)
Dilantane
Thses are just few.
Tobey

**TNT** · 12-27-2001, 05:26 PM

Guys, I know that we want the best for pureanger and his family, especially his son at this early stage of the game. But I think it's important that we leave the medical recommendations (including the medicine recommendations) to the medical experts.

In the wacky world of AS, we tend to make recommendations about cycles and dosages - some smart, some not so smart, and some really dumb-ass. But what we're talking about are specific goals for performance enhancement involving guys and gals who do not have chronic conditions.

In the case of epilepsy, drugs like phenobarb and Dilantin are rarely prescribed these days. They've been replaced by many more modern anti-seizure medications (like Tegretol and Neurontin, and these are just two examples among many). We also do not know the extent of his epilepsy, since pureanger didn't mention whether he is having petit mal seizures, grand mal seizures, or other symptoms. When pureanger's son's doctor considers what medications are best, he or she will take into account the total health picture - not just the epilepsy symptoms, but any underlying conditions that can be identified, balancing out any adverse effects that the various drugs may have on a risk-versus-benefits basis.

In other words, this is not the time to say, "Seizure? Give him phenobarb!" When there is a chronic neurological condition that is being addressed, it's the time to realize that we are not the experts, then leave things to the professionals who were hip enough to diagnose his condition in the first place.

Granted, it's a bitch realizing that we're pretty helpless and that all we can ultimately do is extend our wishes for the best, but medicine has come a long way and the doctors can handle it better than any of us.

**primodonna** · 12-27-2001, 06:32 PM

all i can give you is my thoughts and prayers, PA... i can't do much, but if you need anything, shoot me a PM

**Tobey** · 12-27-2001, 07:11 PM

Very good point TNT
And well said at that.
I can relate to how he feels though and on a much more personal level as I had the same thing happen to me. I hope that it all works out for you Pure A. And keep a good heart, modern technology has come along alot since I was a kid.
IC

**Cali** · 12-27-2001, 08:44 PM

I have no knowledge about epilepsy, but my thoughts are with you PA. I do know someone with epilepsy who I wouldn't have known had it if he hadn't told me. He lives a very normal life, drives even. Good luck with it and don't ever be afraid to ask your doctor a question. They've heard them all I'm sure.

**bravo11p** · 12-27-2001, 10:45 PM

Some really great replies in here that's for sure. JMO though, I would seek out a good support group for this. I have always felt it's good to have others to talk with that have gone and are going through the same things you will no doubt deal with. A lot of people in support groups keep up with the latest research and not to bash doctors, but new therapies and technologies come out every year and people in support groups DO keep up with the latest. But support groups are like buying a car. You gotta look till you find the one that fits you. A good friend of mine is the R&D coordinator for a neuroscience unit here in Tampa. Drop me a PM and I'll get you some info if you would like. Remember that though you don't have epilepsy, YOU are just as much a part of the treatment for your child as the meds. My daughter has a chronic medical condition and I always question EVERYTHING. I do research all the time and look for the newest drugs and therapies. I am Sherlock Holmes when it comes to her treatment. Our thoughts are with you.

**pureanger** · 12-28-2001, 03:50 AM

Everyone thank you very much for the help I know understand that you all are my real family people I can turn to for the help and the support I need thank you again
PA

***Sicilian30*** · 12-28-2001, 01:09 PM

Sorry to hear that Pure. Sorry I can't help much, I personally don't have any experiences with it, but good to see some of the other members can submit their experiences and advice. Nice to know someone has a heart now a days!