Epilepsy Foundation

Hello to you all! First of all, I want to thank you all for sharing your stories. I am very new to this, and it is amazing (to me) that you are so open about you and your families. 

 Here is my question for the day. My son will be 10 years old in April. He was diagnosed with Epilepsy at the age of 5. We have tried every medication. Gotten opinion after opinion, and they are all leading back to one thing, Brain Surgery. We go to meet the surgeons on March 21. I was wondering if anybody is or has gone through a similar situation. I don't know if I am going to decide to move forward or not. I need all the help I can get! Thank you

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Hi Jennifer.  Does your son have an underlying diagnosis that causes the epilepsy?  If they are suggesting surgery, then the seizures must be focal or localized in nature.  How often does he have seizures? 

 

More and more epileptologists are coming to believe that surgery should no longer be a treatment of last resort.  While the thought of surgery is terrifying, I would suggest that a lifetime of damaging seizures is terrifying too.  Does your son have an opinion...or feel strongly one way or another?  I hope that meeting with the surgeons will help you know how to move forwards for your son. 

 

There are no easy answers when it comes to our kids.  We had to take a most dramatic step to help our daughter...a complete left hemispherectomy...so I appreciate how tough and scary a decision you are facing.  There is hope even in surgery though...It's amazing what a child's brain can do! 

My son's seizures are focal, and in the left front lobe. He has about 50 a day. The doctors are amazed on how well he is dealing with it all. He wants the surgery. He says that he just want to be "normal", like everybody else. I have been as honest as I can be with him, and he is taking it all in stride.

Holly P. said:

Hi Jennifer.  Does your son have an underlying diagnosis that causes the epilepsy?  If they are suggesting surgery, then the seizures must be focal or localized in nature.  How often does he have seizures? 

 

More and more epileptologists are coming to believe that surgery should no longer be a treatment of last resort.  While the thought of surgery is terrifying, I would suggest that a lifetime of damaging seizures is terrifying too.  Does your son have an opinion...or feel strongly one way or another?  I hope that meeting with the surgeons will help you know how to move forwards for your son. 

 

There are no easy answers when it comes to our kids.  We had to take a most dramatic step to help our daughter...a complete left hemispherectomy...so I appreciate how tough and scary a decision you are facing.  There is hope even in surgery though...It's amazing what a child's brain can do! 

The VNS is not an option for him and yes, we have tried the Ketogentic Diet

carli ratliff said:

I'm almost 25. My medications lessen my seizures but don't stop them. I won't consider brain surgery for myself. VNS surgery is another option. VNS of course has some possible side effects, but it just seems less scary to me. Have you tried the Ketogenic Diet?

 

 

 

 

 

Jennifer, all I can do is pray.  God bless.

I do not have any suggestions for you as I have not had to look into this option at all.  I just want to say that I can imagine how hard of a decision this is for you.     I have heard good & bad things about surgery.    What every you decide, I give you my best wishes!   My neuro said something to me last night when trying to figure out what to do with my son's current episode of seizures....she said there is not wrong or right answer meaning the decision is just not black & white.    I read a blog a month or so ago from a mom who has been able to find peace and can see the good that has come out of her child having epilepsy.   I wish I could, other than it bringing our family close, I just can't see any good out of it.   It is heartbreaking.    Best of luck in your decision!

My daughter just had VNS surgery this past January, we are still working thru it. She is 7 years old and has seizures since she was 4 yrs.

carli ratliff said:

I'm almost 25. My medications lessen my seizures but don't stop them. I won't consider brain surgery for myself. VNS surgery is another option. VNS of course has some possible side effects, but it just seems less scary to me. Have you tried the Ketogenic Diet?

 

 

 

 

 

My daughter's pediatrican is currently working on a second opinion referral to Shand's Children's Hospital to the recommendation that Miami Children's Hospital said she needed to have a Left Temporal Lobectomy. I thought at the time that that would not be the best decision and decided to go with the less evasive and do the VNS surgery but now i want to see what the second opinion says. It does not hurt to get different opinions. It is a major surgery.  I am trying to except it all and find peace in it but it is very hard. I pray alot for guidance.

I have gotten a 2nd, 3rd,4th and 5th opinion. I just could not accept the fact that he was going through this, let alone needing surgery. The only thing that has gotten me this far is God, and the wonderful support I have from my family. The VNS is not an option for my son, and all opinions say that he needs the surgery. I have tried all medications, all diets, all herbal, and all the praying I can do to get him through this with out surgery, but we always end up back here. We go to Lebonheur Hospital in Memphis in a couple of weeks. They are supposed to be the best at what they do. I am going to get their opinion before I make the final decision.


 I wish your daughter the best of luck, and pray that the second opinion has good news for you.
TRINITY said:

My daughter's pediatrican is currently working on a second opinion referral to Shand's Children's Hospital to the recommendation that Miami Children's Hospital said she needed to have a Left Temporal Lobectomy. I thought at the time that that would not be the best decision and decided to go with the less evasive and do the VNS surgery but now i want to see what the second opinion says. It does not hurt to get different opinions. It is a major surgery.  I am trying to except it all and find peace in it but it is very hard. I pray alot for guidance.

Hello Jennifer- My name is Gail, my son is Robert. He has grand-mal siezures. I know full well what

your going through!

Robert has been having seizures since about 11 now, he will be 25 this July.

His doctor at Albany Medical Center had wanted to do the same thing, we had discussed

it & we said no. So his doctor had put him into the hospital & took away his meds so he could

be able to see what he was dealing with. Soon after he saw first hand, he suggested to us that

Robert was an excellant candiate for the (VNS). We as a family had no life & neither did Robert as

his seizures were out of control. Robert recieved the implant & has been doing great ever since.

We have our life back & so does Robert in part thanks to his VNS.

Good Luck & prayers on what you decide as a family. - Gail

Dear Jennifer,

I have a 11 year old daughter who had brain surgery May of 2009 in Boston. She has been seizure free since then. It can't hurt anything for your family  to look into  the process of surgery,to see if it's right for you. If your interested you can look at Gwendolyn's caringbridge site. The site has almost every part of the process that  we went through.

Blessing to you and your family,

Nancy

http://www.caringbridge.org/visit/gwendolynguay

Just let me know if you have anymore questions.

 

Jennifer
I just wanted to say in response to you saying you have tried all the medications and diets and herbs and praying I understand I am always praying but sometimes I'm so busy praying that I keep missing his answer. I think if you keep ending back up at the surgery then maybe possibly that is gods answer for you and your child its so hard to have that faith like a child I am always praying and then trying to have a back up plan I have to teach myself to pray and listen pray and listen and trust god is answering me over and over its almost the same as when people get all their taxes and then their car breaks down the first thing to think is man everytime I get money something comes up I've now trained my self to realize god gave me the money when I needed it. I know this sounds funny but I will pray for you to have peace with whatever decision you make and I know it will be right because god is answering you over and again

Jennifer, 

I don't have any wisdom to share, but will be offering up my prayers. My three year old son was just diagnosed with epilepsy based on his eeg. We are going back the 21st for an mri. I will definitely keep you all in my prayers for this obviously tough decision you have to make. 

God's richest blessings, 

Valerie

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