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.

@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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@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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@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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@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.

REPLY
@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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