New to the forum and to Epilepsy

[Constantly Worried]

Hello everyone!
:brain:
I would never had dreamed 5 months ago that I would be typing this thread today in this forum. My 11 year old son and I have spent the last two years trying to cope with my husband's, his father's death. We try to keep busy and have lots of friends to help us through. We are very active on the weekends from camping to four wheeling to fishing. My son is very healthy and seems to be dealing with his dad's death as well as can be expected.

Then all of sudden we get dealt another blow....2 days after my son's 11th birthday, he wakes up, it's 3:00 am on a Thursday morning and he is having a grand mal seizure! Of course at the time, I did not know what he was having! I was hysterical, screaming at the top of my lungs for someone to make it stop. We run to the ER and they run tests, all of which were normal. We go to our first neurologist and she says more than likely it is a one time thing go home and do not worry or change a thing. 1 week later we have another grand mal. The doctor puts him on Tegretol and orders more tests, all of which come back as normal. In the meantime he has these what we call "moments" throughout the day where he says his "legs won't do what he is telling them to do". These "moments" begin occuring more often. Our doctor shrugs and says "I don't know what they are" and sends us to a medical facility 100 miles away.

They tell us to try this and that. They run more tests etc. They say that his "moments" are petit mal seizures. It is 2 months later and we are nowhere and his "moments" are increasing in duration, frequency and intensity. Now he can barely stand when they occur, we have to guide him to a chair. His arms and legs go stiff and shake. He makes strange noises and has eye deviation and dilation. These occur anywhere from 6-8 times a day, each episode lasting less than 25 seconds. After trying three other types of medicine we seek the advice of another recommended neurologist who is over 200 miles away.

This doctor puts him in the hospital to monitor him on an EEG for a few days. After 30 episodes captured on the EEG the doctor says there is no evidence of epiletiform activity!! Then what is it?? He says let's look at what else it could be...and sends us for theray on a newly discovered inner ear imbalance my son has. He also sets us up with an appointment at a Comprehensive Epilepsy Center 350 miles away. The appointment is an unbelievable 5 more months away!! By now my son's episodes are coming 11 times a day and now there is no guiding him to a chair when they occur. He drops like a rock! We have to use a wheel chair to ensure that he does not hurt himself while we are out and about. He is on an obscene amount of an anti-convulsant drug, more than the maximum for adults.

My son has gone from four wheelers to a wheel chair in less than 2 and half months!

Finally I decide that we can't wait 5 months for an appointment somewhere. I start calling the top pediatric hospitals for neurology in the country and finally have some luck. A center about 650 miles away agrees to see us in two weeks. We go and they repeat tests and confirm this is epilepsy and these "moments" he is having are petit mals. They say we will not benefit from medicine since we have tried 5 different types with no relief. They tell us to come back for a surgical evaluation. Oh my gosh!!

Brain surgery!?!?!?

We go back and they run more tests. They say they have found the source of his seizures. Right frontal lobe. 90% positive it can be resected without any impact to motor functions etc. They send us home and now we await them to call us back for the surgery. I am happy because it affords us a chance for a cure but I am very worried.

It has been four months since this all began on that fateful day in June. Neither of realized how much our lives would change in the coming days and weeks after that first seizure. Everything almost seems surreal even though every day is a struggle.

I am not sure how to handle or deal with my happy, vibrant, active, caring, young boy, undergoing brain surgery! Thanks for letting me share our story!

 

[brain]

:hello: CW,

Welcome to CWE, and Epilepsy / Seizures can be
a nightmarish "hell" for many and much worries upon
the shoulders of parents and families! Your best bet
would be to read up here by clicking on this:
EPILEPSY 101
for starters and feel free to browse around.

We have other parents with children who have undergone
battles and having to endure much to get the proper
diagnostics and treatments. Brain surgery does sound
very scary, but there is another person I will try to
have over here to post, "Ginny", who often posts in
the PHP (Parents Helping Parents) in the Epilepsy
Foundation's eCommunities ... She's a real sweetie,
not only she has Epilepsy, so does her offspring too,
she has a lot of knowledge and experience behind her
back ...

((((((( much hugs to you and everyone )))))))))

 

[Bernard]

Hi CW, welcome to the forum. :hello:

Brain surgeries have a pretty good success rate (at least for a few years). Best wishes!

 

[Cint]

Hi Worried & welcome,

I'm sorry you've been through such a difficult time. Having seizures are a nightmare and I can only imagine what it must be like for a mother of a child with epilepsy. Good for you for taking it upon yourself and calling the top pediatric hospitals in the country.

I had brain surgery years ago, but mine was on the left temporal lobe. Since your son's would be in the right frontal lobe and he's 11 years old, the chances of success now are really good. I had mine back when I was 32 years old, so the younger a person is and the sooner they operate after seizures starting, the more likely his surgery will be successful.

Best of luck to you and your son.

Cindy

 

[Nancy]

My heart aches for you ..... and I don't have children so I can't even imagine what you are going through.
But I have had brain surgery so I understand the terrifying nature of those words.

You said you were going to a "top pediatric hospital" .... Good!! That's NECESSARY!!
I went to Barnes Jewish Hospital/Washington University in St Louis, MO and had fantastic surgery -- twice - lol.

"Brain Surgery" is scary but it can change a life in remarkable ways. Start WRITING questions now to take along when you go to appointment.

Welcome aboard. Much love and many prayers

 

[alivenwell]

For me, personally, stress is a huge trigger. Could the death of your husband have caused some stress that induced the seizures? Kids don't always tell all of their feelings to others. He probably sensed some stress from you.

I can relate to his zombie state. I personally found my sense of balance to be slightly disrupted when I started on Mysoline (Primidone). I am still taking that, but I am fine now. It took several months to adjust to it. Now, I'm simply not a morning person. I can live with that.

Go to the BEST neurosurgeon. Look at their statistics if possible. Get their ratings by health insurance companies. Those companies often have a reputable group of doctors within a network.

Good luck. It's a wild ride from now on. I know this is really difficult, but try to not over react to his seizures. I've seen some seizures and also freaked out 'cause I had no idea what they looked like. I have no idea how my mom managed to keep her head level over all the chaos in my childhood. I was denied access to play equipment and I was a really active kid. Kids don't have a concept of liability. All I can say is try to treat your son as normally as possible. He'll appreciate it.

 

[tinasmom]

Welcome -
As a mother who has been dealing with Epilepsy for over 20 years, I know how you feel. Fortunately, your son has the opportunity to have brain surgery to stop his seizures. I can understand all the feelings that you are going through. Brain surgery is a frightening thought, but I do have friends on other sites that have gone through the surgery. I also know a woman here that has had the surgery and her life changed so much for the better. I will keep you and your family in my prayers.

 

[kayakmom]

I am so sorry you are dealing with so much, first with dealing with the loss of your dear husband and now with your son!! I am especially sorry that your son's first doctor was such an IDIOT! Been there, done that, it is just hideous!

I am glad the other place was there for you, but so sorry it was so far away! One of the posters here said it well, GET to the BEST neurosurgeon if you proceed with surgery. Being the FIRST to see him, is not always what is best.

Cleveland Clinic is top notch, CHildren's hospital of Boston and Le Bonhuer are among the best (not necessarily in any order) I have friends who have used ALL three.

Excellent doctors and top neurosurgeons.

Best wishes

Ginny

 

[skillefer]

Hello CW! Welcome to CWE. You'll find lots of great info, as well as alot of people whose shoulders you can cry on here. I'm so sorry to hear about your son's seizures and bad luck with meds. But I am glad that you finally got to see a good doctor. As the others have said, if you're looking at brain surgery, go to the best. It's a scary thing...and I'm sure as scary as it is for you, it's probably terrifying for your son. As alivenwell suggested, he may be keeping alot of emotional stress inside. Many of us find that stress as well as lack of sleep are common triggers. So try to find ways to lower both your stress levels. And just remember, kids actually observe quite a bit of what their parents are feeling. So try to stay positive. And remember, you're not alone. We're here for you.

 

[drarvindr]

Dear CW,
You have dealt with an extremely difficult situation admirably. Don't blame yourself for your son's seizures or anything that has happened since. You sound like a great mom!. Some neurologists can be heartless. I was diagnosed with eiplepsy 13 years ago. My mom had a seizure a year ago and the first thing my neurologist says is " Well , i guess we found out how arvind got his !" . The world is full of insensitive jerks like this. Don't worry. Everything should pan out fine. Before the surgery , talk to the neurologists and find out everything there is to know about the exact procedure involved. You need to know the risks and what can happen prior to the surgery. I know this must be a frightening time for you. When my grandfather was having surgery , a doctor asked me what the trouble was. i told him i was scared. he said " so am I. but your grandma is ten times that , and your grand dad is a hundred times that. Take an effort to act normal and assure them through your actions that everything will be fine, even if you don't know that they will be." It was some of the best advice i received in my life and am telling you to do the same. You don't need to be brave, no one can ask that of you after all you've suffered. all you can do is to pretend that you are for your son. And to tell you the truth , no one can tell the difference.
I wish your son a speedy recovery and the best ofl uck for the surgery.

 

[Kansas Educator]

Prayers and hugs coming your way.

 

[josieb]

Although it's for horrible reasons, I wanted to welcome you to the group, and first tell you how sorry I am about everything that you've had to deal with. You sound like a strong mother and thanks to your continued pushing ahead, your son will now hopefully be able to get the help that he needs. When you first hear the words "brain surgery", it is so frightening. I had surgery to remove a tumor from my left temporal lobe over 2 years ago. It has now been over a year that I have been seizure-free. I wish you and your son the best of luck. This is a great forum with so many knowledgeable people who will support you all the way. Good luck and God Bless you!
Sincerely, JosieB

 

[Constantly Worried]

Thank you all for the warm welcome. I feel better already! Helps just to talk about it. I will keep everyone informed on our progress. Thanks!

 

[Meetz1064]

I'm so

sorry for everything that you're going through. I am sure it is not easy. But you will make it. I am sure of that. Make sure that you research the doctors, and the meds, too. But remember that your son does notice all of your reactions to everything. Stay as calm as you possibly can. I know that's hard, but it's really necessary.

Take care, and good luck.

Meetz