1. < Epilepsy & Seizures
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Risk of passing epilepsy to children?

Posted by ssaygi @ssaygi, Nov 16, 2018

My daughter had epilepsy and well treated at her age 3-8.She has 5 year old mail twins.How can we get sure if my grand sons will have or not epilepsy risk?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

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jamessr | @jamessr | Apr 3, 2024
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Jake @jakedduck1

Epilepsy does run in families.
Over 100 Epilepsy related genes have been found.
I was the first known member in our family to have it but since then my brother and his son have been diagnosed with Epilepsy.
It is more common for siblings to have Epilepsy than children born to parents with Epilepsy.
There are DNA tests that look for deleted or mutated genes and some other DNA tests that may assist you with your concern about the boys, especially where certain Epilepsy Syndromes may be present.
I’m waiting to hear from University California San Francisco Medical Center about what my next step is for DNA testing.
Hopefully they will find out what caused my Epilepsy.
Below is a little information on EGI.
EPILEPSY GENETICS INITIATIVE (EGI)
EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy.
EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an effort to find the cause of the person’s epilepsy (not all epilepsy has a genetic cause). Findings will be reported back to the person's doctor. The data will also be made available to advance research.
Best wishes & good health to your family.
Jake

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My son has suffered with uncontrolled seizures for 25 years. We've done SEEG's Laser surgery and had a VNS implanted . We've tried every know ASM
on the market and have been participating with the Zenon 1101 research project for over two years, all with limited success. I've always thought that our doctors were treating the symptoms not the cusec of epilepsy. Finally Mayo referred us to a new department that was doing genetic testing. The test done by a company called Invitae. They did a analysis for over 320 known genes that causes epilepsy. Within two weeks the test came back identifying a single variant gene called NPRL3 that was the cause of my sons hereditary Epilepsy. Knowing the genesis of our seizures gives us new hope and optimism for a treatment and a cure. If you have not been tested genetically, I encourage you to have that discussion with your doctor ASAP

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mxyzptlk32 | @mxyzptlk32 | Jul 12, 2020
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Jake @jakedduck1

Epilepsy does run in families.
Over 100 Epilepsy related genes have been found.
I was the first known member in our family to have it but since then my brother and his son have been diagnosed with Epilepsy.
It is more common for siblings to have Epilepsy than children born to parents with Epilepsy.
There are DNA tests that look for deleted or mutated genes and some other DNA tests that may assist you with your concern about the boys, especially where certain Epilepsy Syndromes may be present.
I’m waiting to hear from University California San Francisco Medical Center about what my next step is for DNA testing.
Hopefully they will find out what caused my Epilepsy.
Below is a little information on EGI.
EPILEPSY GENETICS INITIATIVE (EGI)
EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy.
EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an effort to find the cause of the person’s epilepsy (not all epilepsy has a genetic cause). Findings will be reported back to the person's doctor. The data will also be made available to advance research.
Best wishes & good health to your family.
Jake

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Thanks for the info regarding EGI @jakedduck1. I will be giving this info to my son, actually all my children.

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Profile picture for mxyzptlk32
mxyzptlk32 | @mxyzptlk32 | Jul 12, 2020
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Jake @jakedduck1

Epilepsy does run in families.
Over 100 Epilepsy related genes have been found.
I was the first known member in our family to have it but since then my brother and his son have been diagnosed with Epilepsy.
It is more common for siblings to have Epilepsy than children born to parents with Epilepsy.
There are DNA tests that look for deleted or mutated genes and some other DNA tests that may assist you with your concern about the boys, especially where certain Epilepsy Syndromes may be present.
I’m waiting to hear from University California San Francisco Medical Center about what my next step is for DNA testing.
Hopefully they will find out what caused my Epilepsy.
Below is a little information on EGI.
EPILEPSY GENETICS INITIATIVE (EGI)
EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy.
EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an effort to find the cause of the person’s epilepsy (not all epilepsy has a genetic cause). Findings will be reported back to the person's doctor. The data will also be made available to advance research.
Best wishes & good health to your family.
Jake

Jump to this post

@ssaygi

My son is concerned for his daughters also. A link to the National Center for Biotechnology Information website with more information on EGI studies, should you choose to look into that. I wish the best for you and your family.

Normal Disclaimer: Do not open links to websites from unknown sources.
https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi.
Acknowledgement Statement: Please cite/reference the use of dbGaP data by including the dbGaP accession phs001551.v1.p1. Additionally, use the following statement to acknowledge the submitter(s) of this study:

All publicity and publications that utilize data generated through the EGI Collaborative will acknowledge in a prominent position the contributions of CURE via reference to the 'Epilepsy Genetics Initiative, A Signature Program of CURE'.

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Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 25, 2020
In reply to @saneezrimal "I too have a epilepsy and i m taking medicine and when ever i stop taking..." + (show)
Profile picture for saneezrimal @saneezrimal

I too have a epilepsy and i m taking medicine and when ever i stop taking medicine i get epilepsy attack

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Hi, @saneezrimal - I noted you made your first post on Connect. Great to hear from you.

Hoping you may have gotten to see all the discussions on the Epilepsy & Seizure Disorders group on Connect https://connect.mayoclinic.org/group/epilepsy-2bb359/. One particular thread in addition to this one you might enjoy is this one on living with epilepsy https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/.

Do your parents, or your children, if you have them, also have epilepsy?

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Profile picture for saneezrimal
saneezrimal | @saneezrimal | Mar 25, 2020

I too have a epilepsy and i m taking medicine and when ever i stop taking medicine i get epilepsy attack

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1 reply
Profile picture for ssaygi
ssaygi | @ssaygi | Mar 23, 2020
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Jake @jakedduck1

Epilepsy does run in families.
Over 100 Epilepsy related genes have been found.
I was the first known member in our family to have it but since then my brother and his son have been diagnosed with Epilepsy.
It is more common for siblings to have Epilepsy than children born to parents with Epilepsy.
There are DNA tests that look for deleted or mutated genes and some other DNA tests that may assist you with your concern about the boys, especially where certain Epilepsy Syndromes may be present.
I’m waiting to hear from University California San Francisco Medical Center about what my next step is for DNA testing.
Hopefully they will find out what caused my Epilepsy.
Below is a little information on EGI.
EPILEPSY GENETICS INITIATIVE (EGI)
EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy.
EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an effort to find the cause of the person’s epilepsy (not all epilepsy has a genetic cause). Findings will be reported back to the person's doctor. The data will also be made available to advance research.
Best wishes & good health to your family.
Jake

Jump to this post

Hi, My son had ehilepcy during his childnood and fortunately recovered. He got married and has a doughter. My grand doughter is diagnosed with epilepcy when she became 16 years. Unfortunately I don’t hear much about how she is doing because she lives a part.

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Profile picture for Jake
Jake | @jakedduck1 | Jan 14, 2019

Epilepsy
@ssaygi
Good morning,
Although trying to convince you not to worry about the twins will be futile, I know you will. I guess that’s normal. If a parent has Epilepsy then your child usually has less than a 5% chance (usually only a 1-2% chance, some estimates are up to 10%) of developing Epilepsy. Did your daughter have Generalized seizures? How old was she when she started having seizures? Oops, I remember she was a child. Although seizures are more likely if the mother has E and if they were generalized seizures. The risk decreases the older the parent/s were and if the father was the one with E. Also the more members in the family that have E the percentage increases. I was the first to have E in my family but now my brother and his son also have it increasing the chance for his grandchildren of having it. My brother was 22 and his son was about 24 when they got it. Even if your grandson/s get it he/they may well have a low seizure threshold and only have Absence seizures.
Hang in there,
Jake

REPLY
Profile picture for ssaygi
ssaygi | @ssaygi | Jan 14, 2019
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Jake @jakedduck1

Epilepsy does run in families.
Over 100 Epilepsy related genes have been found.
I was the first known member in our family to have it but since then my brother and his son have been diagnosed with Epilepsy.
It is more common for siblings to have Epilepsy than children born to parents with Epilepsy.
There are DNA tests that look for deleted or mutated genes and some other DNA tests that may assist you with your concern about the boys, especially where certain Epilepsy Syndromes may be present.
I’m waiting to hear from University California San Francisco Medical Center about what my next step is for DNA testing.
Hopefully they will find out what caused my Epilepsy.
Below is a little information on EGI.
EPILEPSY GENETICS INITIATIVE (EGI)
EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy.
EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an effort to find the cause of the person’s epilepsy (not all epilepsy has a genetic cause). Findings will be reported back to the person's doctor. The data will also be made available to advance research.
Best wishes & good health to your family.
Jake

Jump to this post

Hi Jack, thank you for your reply. My grandsons do not show any epilepcy signs. Some neurologists I contacted told me there is no preemptive method to follow. What kind of genetic tests can be conducted when there is no symptom?Any idea?

REPLY
Profile picture for ssaygi
ssaygi | @ssaygi | Nov 30, 2018
In reply to @lisalucier "Hi, @ssaygi - I'd like to add my welcome to Mayo Clinic Connect. I've given this..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @ssaygi - I'd like to add my welcome to Mayo Clinic Connect. I've given this discussion you've started placement in both our Epilepsy & Seizures group as well as our About Kids & Teens group, so that it might get responses from a variety of members.

I'd like you to meet members like @patrassi @rachelanne @crstyday40 @lethargic @lmcquade, who have talked about epilepsy or seizure disorders. They may have some thoughts on your 5-year-old grandsons' epilepsy risk with your daughter having had that diagnosis, and perhaps some of them have looked into questions on the heritability of this disease.

@ssaygi - do you know what the boys' doctor has said about their risk of this disease?

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I would like to hear from @crstyday40 who has similar history like my doughter and kids.

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