Mayo Clinic Connect
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?
Liked by Leonard
I’m sorry your daughter has Epilepsy and I can imagine how difficult it is to not know if your grandsons will have Epilepsy or not. I’ve had Epilepsy for over 50 years and have always wanted to know why but I’m resolved I never will. Most Epilepsy sufferers will never know why they came down with it. Your grandsons may benefit by some genetic testing which may find a deletion or gene mutation that may contribute to some types of epilepsies. Genetic testing helps scientists and physicians better understand how various genes may interact to produce certain types of Seizures. Some perhaps all epilepsies have a genetic component, we also know that epilepsy can run in families. Does anyone else in your family have the condition? Specific abnormalities have been discovered on certain genes that researchers believe are responsible for some Epilepsies. From the little I know it will be a waiting game to find out about your grandsons. Perhaps Mayo Clinic or another of the reputable universities has some information on genetic/DNA testing for Epilepsy. There has also been pharmaceutical advancements where DNA testing can tell what the best medication would be most beneficial to control seizures. I don’t know if all Anti-convulsants are able to be tested though.
The one thing I do know for sure is There’s no point to worry about tomorrow, 99% of what you worried about will never come true and the other 1% will happen anyway.
Wishing all of you the very best,
Liked by Lisa Lucier, lynette1975
Just curious, wouldn’t this post get more exposure in the Epilepsy section?
Not trying to run the show, just wondering.
Liked by Colleen Young, Connect Director, mxyzptlk32
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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Hi- I haven't looked into any heritability of the disease information. Im sorry I cant provide any information about that. The only thing I would think that I may try, if I was worried about my children being at risk, would be to do a diet modification as a preventative measure. She may want to follow up with her neurologist/epileptologist and see what their thoughts would be about that option for her children.
Liked by Lisa Lucier, Leonard
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.
Liked by Lisa Lucier
I would like to hear from @crstyday40 who has similar history like my doughter and kids.
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?
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,
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.
I too have a epilepsy and i m taking medicine and when ever i stop taking medicine i get epilepsy attack
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?
Liked by Leonard, saneezrimal
Thank you soo much @lisalucier
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.
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'.
Thanks for the info regarding EGI @jakedduck1. I will be giving this info to my son, actually all my children.
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