My son Joey

[suemrose]

On August 7th, 2007, my 14-year-old son Joey was swimming underwater at his grandparents' subdivision pool. When his grandmother
noticed he had remained in one spot for several minutes, she swam over to him, nudged him, and receiving no response, turned him over and lifted his face out of the water.

He was blue and motionless. She thought he was dead.

Luckily, his 74-year-old grandmother is a retired emergency room nurse. Although she couldn't lift him completely out of the water, she pulled him over to the steps and was able to get him breathing. Then she screamed for help, alerting a neighbor who was in a nearby weight room. The man pulled my son out of the water and called 911. He then drove Joey's grandparents to Arnold Palmer Hospital for Children, where Joey was rushed by ambulance, and where he remained unconscious.

Joey was unconscious for almost 24 hours. When he came to at 3:00 AM the next morning, he asked, "Mom, where am I?" All he could remember was swimming underwater and then waking up at the hospital.

The doctors had no explanation for what happened to Joey. They suggested that perhaps he had fainted while holding his breath for too long underwater. This phenomenon is often referred to as shallow water drowning, when a person hyperventilates to hold his breath for as long as possible and then passes out. Many deaths of strong swimmers have been attributed to this.

One doctor at the hospital asked if Joey had a history of seizures. We all told him "No."

Since then, Joey has visited numerous doctors (pediatrician, neurologist, endocrinologist) and has been poked and prodded and subjected to many brain scan M.R.I.s, E.E.G.s, and blood tests.

From the results of the E.E.G., the pediatric neurologist determined my son was indeed having Absence Seizures from Generalized Epilepsy, and may have been having them for quite a while.

(The previous school year, in 8th grade, Joey's grades had dropped dramatically, and his teachers had complained of his constant daydreaming. One had remarked that it was as if he "wasn't even there.")

For several years, teachers had hinted at Joey's lack of focus or possible ADD or ADHD.

Now, we learned he had Epilepsy, and all of us were in shock...especially Joey. In retrospect, we should have realized there may have been a physical reason for Joey's lack of focus on his classwork...that it was not attributed to adolescence, lack of discipline, or plain laziness.

But...Epilepsy?

For now, Joey is taking Keppra (soon to be weaned off) and Lamictal (soon to be increased).

There is also a suppository medication at his school, his dad's home, my home, and his grandparents' home in case Joey were to have a seizure lasting longer than three minutes.

Joey is restricted from lifting weights, climbing, swimming, or riding his bicycle without strict supervision. He was also told he cannot drive or attempt to get his driver's permit for at least two years, until it is determined that his Epilepsy can be controlled by medication.

However, Joey was also warned that he may never be able to drive in his lifetime...not an easy fact for an adolescent to accept. He is also restricted to playing video games for just a 1/2 hour per day. Worst of all, Joey is also limited to the amount of time he can spend on his precious computer.

These days, Joey is very angry. In a moment of exasperation he even exclaimed, "I should have drowned in that pool!"

A self-proclaimed "geek," after high school Joey's dream is to attend Rensselaer Polytechnic Institute (RPI) in Troy, New York. He wants to be a software engineer.

Since the age of 11, Joey has been creating websites, building PCs from scratch, and networking all the computers in our home. He even gets paid to update the website for his grandparents' Orchid Club.

Yet at 14, the age where most kids are gaining independence, Joey is being severely restricted and supervised. He is depressed, angry, and ashamed. He felt it was bad enough to have Chronic Asthma, but now THIS!!!?? He doesn't want anyone to know, but I've spoken to the school nurse and informed his teachers.

His medications make him feel exhausted, but his fatigue must surely be compounded by the 7:15 AM high school start time and 6:20 AM bus.

As his mother, I want to do everything I can to help Joey. I feel it's important that Joey know he's not alone, that there are other successful and even famous people in the world living and even thriving with Epilepsy. I am encouraging and supporting his dream of becoming a software engineer/computer programmer. I want him to learn to take care of himself while living as "normal" a life as possible.

I think this is a wonderful site for people living with Epilepsy and their families to vent, share experiences (both good and bad), and support each other, but Joey is not ready to accept the diagnosis of
Epilepsy yet, and therefore not willing to look at support sites.

Our biggest worry right now is his upcoming visit to yet another specialist. The results of his most recent M.R.I. brain scan showed a malformed pituitary gland. His neurologist could not determine if Joey has a birth defect or a small growth or tumor.

Upon learning this latest bit of news, Joey told me, "Mom, if I have a brain tumor, I'll be pissed!"

He then added that he would never permit anyone to operate on his brain.

His dad, brother, grandparents, and I, and all of Joey's extended family are hoping for the best, or
at least the strength to deal with what may come next so we can support Joey as much as possible.

My thoughts and prayers are with Joey and with all of you and your families.

Thank you for sharing your stories and for allowing me to share Joey's.

Take care.

[TeeTees]

Hi suemrose,

First and Foremost, welcome to the site : I'm fairly new here, and the support, understanding and help you get from other's is phenomenal.

I really feel for your son Joey, and wish him all the best. I don't believe that Joey's dream off becoming a Software Engineer should be impaired by his condition - I was told that basically I cannot drive a public service vehicle (bus), or operate heavy machinery. Please tell him this, as it might open up his dreams about his future, and also make him realise that IF (big IF) he has to have any operations, it will most certainly be for the best.

Try your hardest to get Joey on here, even for just that 1/2 hour, so that he can get a better understanding that he ISN'T a teenage "freak", and that he is NOT alone......he's just special.

I wish you and your family all the best, and please remember : if you need support, or somewhere to share your experiences/emotions, get on here - this is a great place

[RobinN]

My 15 yr old can relate to Joey's situation. The best advice her older brother gave to me though as we were beginning this journey was, "Mom, don't put her in a bubble."

Next best advice, (not sure who to thank) was to keep a journal as to when, what, where, why, and how. I keep mine on a calendar specific to this, others have found other ways to record this.

My daughter is a competitive ice skater. She was kept off the ice for a few months until we could be certain that her seizures were not life threatening. She has never had a seizure or episode while skating. This is her passion, and to take it away would certainly be a cause for suicide watch. Last weekend she passed what is considered one of the highest levels in United States Figure Skating. She passed her Gold Senior Moves in the Field test. A huge accomplishment, and a much needed boost to her self esteem.

My daughter has a focus area in the right frontal lobe that one hospital said was not a cause for a seizure disorder, others have disagreed. So who to believe. She too says... Absolutely no surgery!

We are working at the moment with a neurologist at USC Neurology. Our main focus is hormonal therapy, nutritional therapy and anti-seizure meds. Guess which one the doctor is most interested in?

How is your sons diet?

I am glad that you shared. What a scary time for his grandmother. I am glad that you have support to help you deal with Joey's current situation. You will find some incredible information here. Being diagnosed with E is not the end... it is only the beginning to find out why his seizure threshold is so low. Everyone had a seizure threshold.

Also: My daughter uses the computer constantly and it has never bothered her in the least.
In addition... it is never good to look back and kick yourself for not noticing something. You know what you know now, and it is a great opportunity to really observe and listen for the clues. Don't ever expect others to do that for you. Only you were given the instincts that clue you into your son.

Good luck and let us know how we can support you.

[Bernard]

Hi Sue, welcome to the forum.

Even though he may not feel like it, Joey is one lucky guy! Not only to survive the pool incident, but to have so many people looking out for him.

Fortunately, there are a lot of treatment options available these days. If a tumor is confirmed, I'm sure the docs will inform you of the best course of action.

If no tumor, I'd suggest looking into EEG neurofeedback. Stacy (my wife) has not had any absence seizures in over a decade now since she completed 5-6 months of neurofeedback sessions and she used to have multiple absence seizures every day.

BTW, he could be the cool guy on the block with one of these.

[speber]

Not to mention, as we all know but have tried to forget!.....puberty blows!...


Keep him and YOURSELF happy and stress-free as you can...it'll help you all.

In time, he'll come to terms with his epilepsy...but right now he just needs to be a teenager, right?

For myself, it was time to start a band!


Good luck, best wishes.

[1096]

tell him im cooler than sliced bread and i have epilepsy. and show him the song Freak by silverchair, if he still thinks he's a freak at least he may reconsider. just give him time, he'll adjust and mature and realise it's not the end of the world.

1 in 50 people have epilepsy.

[brain]

Sue!

Tell your son no worries! I was born
with it and I'm still here, survived everything
except a car over a bridge or a mountain!



One thing I don't want to experience!

Tell him to ROCK ON! Party ON!