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?

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Profile picture for caron7
caron7 | @caron7 | 12 hours ago
In reply to @lisalucier "Hi, @caron7 - welcome to Mayo Clinic Connect. Just to clarify: Are you asking if your..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @caron7 - welcome to Mayo Clinic Connect. Just to clarify: Are you asking if your grand mal seizures are genetically related to one granddaughter's partial seizures and the other granddaughter's autism?

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@lisalucier
Yes, it is that that I am asking!

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caron7 | @caron7 | 12 hours ago
In reply to @jakedduck1 "@caron7 Epilepsy is quite common in people who are autistic & those who have developmental disabilities...." + (show)
Profile picture for Leonard @jakedduck1

@caron7
Epilepsy is quite common in people who are autistic & those who have developmental disabilities.
Although I was hit in the head with a baseball bat as a child which is a possible cause for my epilepsy my brother and his two kids also developed it after I did so whether it was the baseball bat incident or genetics, who's to say. I had some kind of genetic testing in a study decades ago and don't remember anything about it now.
I wrote on here previously about the chances of children developing epilepsy from their parents, but I've been unable to find that information.
Does your granddaughter with autism also have seizures?
Take care,
Jake

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@jakedduck1
No, she does not, so far. The other granddaughter developed absence seizures about two years ago.

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Leonard | @jakedduck1 | 13 hours ago

@caron7
Epilepsy is quite common in people who are autistic & those who have developmental disabilities.
Although I was hit in the head with a baseball bat as a child which is a possible cause for my epilepsy my brother and his two kids also developed it after I did so whether it was the baseball bat incident or genetics, who's to say. I had some kind of genetic testing in a study decades ago and don't remember anything about it now.
I wrote on here previously about the chances of children developing epilepsy from their parents, but I've been unable to find that information.
Does your granddaughter with autism also have seizures?
Take care,
Jake

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1 reply
Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago
In reply to @caron7 "A granddaughter of mine has partial seizures, while I have grand mal. The other granddaughter has..." + (show)
Profile picture for caron7 @caron7

A granddaughter of mine has partial seizures, while I have grand mal. The other granddaughter has autism. Is anyone heard of this?

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Hi, @caron7 - welcome to Mayo Clinic Connect. Just to clarify: Are you asking if your grand mal seizures are genetically related to one granddaughter's partial seizures and the other granddaughter's autism?

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1 reply
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caron7 | @caron7 | 2 days ago

A granddaughter of mine has partial seizures, while I have grand mal. The other granddaughter has autism. Is anyone heard of this?

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1 reply
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Leonard | @jakedduck1 | Jul 27 10:13am

@jal333
Here is contact information for CURE EPILEPSY.
https://www.cureepilepsy.org/about-cure-epilepsy/contact-us/
This study was started more than 10 years ago and I'm not sure if they're still accepting new participants or not.
Here is a link to sign up fore their news letter/updates.
https://www.cureepilepsy.org/subscribe/
I was the first in my family to get epilepsy, followed by my brother then his son & daughter.
Good luck to your family,
Jake

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jal333 | @jal333 | Jul 27 8:43am
In reply to @jakedduck1 "Epilepsy does run in families. Over 100 Epilepsy related genes have been found. I was the..." + (show)
Profile picture for Leonard @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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Jake, how do I participate in this EGI study? My older brother, my younger sister and my grandson all have epilepsy. Seems to me that we could contribute to a study/research. I am looking for a link to the study.. Thank you, Jane

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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 Leonard @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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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 Leonard @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

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

REPLY
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 Leonard @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?study_id=phs001551.v1.p1#:~:text=The%20Epilepsy%20Genetics%20Initiative%20%28EGI%29%20was%20created%20in,a%20secure%20genetic%20diagnosis%20from%20their%20initial%20sequencing.
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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