Epilepsy Forum - Someone Please Help Me


Someone Please Help Me

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bansheegirl20

New User, Becoming EHEALTHy

Joined: 08 Sep 2004
Posts: 3
Location: Great Falls, Montana

Someone Please Help Me Posted: 09-10-04 12:08pm


My name is jennifer and I am 21 years old. I have had seizures since I was 14. I got married to a guy in the air force this past may. I love him very much. He was the first guy who didn't run from me when he found out that I had seizures. He is very understanding when it comes to my medical condition. We want kids later on in our marriage, but not till like five years down the road or so. I thought I was pregnant about a month after we were married, but he never knew about it. I'm scared to death of getting pregnant for several reasons. One reason is that I am far away from friends and family due to the fact that he is in the air force and he had to be stationed clear across the u. S. I'm scared because I don't know anybody up here, I have no friends and I don't know what to expect if I do happen to get pregnant sooner than what I wanted to get. My main concern though is that my baby will have seizures or something else wrong. I will feel that it is my fault. I'm not going to love the baby any less or anything, it's just i'm afraid that my husband will always feel it is my fault that our baby is the way it is. I don't want my kid to blame me later in life either. Is there something I can do? Is seizures hereditary? I don't want my child to go through all the teasing that I had to go through, it's not easy. I know I worry too much.

danceman

New User, Becoming EHEALTHy

Joined: 17 Jul 2004
Posts: 22
Location: Australia

Banshee Girl 20 Posted: 09-11-04 01:35am


Hi, whilst I cant answer all your questions/concerns I hope that what I have put below helps you somewhat. I have had epilepsy since birth and are now 43 yrs old,never been able to get a licence as in australia you must go 2yrs without a seizure before applying,however, re your concerns of epilepsy been heriditary, my grandmother had epilepsy and her seizures stopped when she was 18 and never had another one ,but doctors dont believe that it has been heritarty in my case. My grandmother lived to raise 4 healthy daughters all free of epilepsy,my brother did not get epilepsy,he has now raised a family of 4 kids of which none have epilepsy. Women with epilepsy also have to be extra cautious as the anti eplieptic medications can cause problems at pregnancy ,it would be very sensible to consult a nuerologist for advice and a gynocologist if you are pregnant, dont blame yourself, its not your fault you have epilepsy but it would be worth investigating ways to control it. Firstly,medication, if not succesful after trying several medications and tests such as e.E.G.S and m.R.I.S show no change you could try a relatively new device ,if it is suitable for you, called vns vengas nerve stimulation . Another option to consider one again only if you are a suitable candidate, is surgery, you would undergo tests before you would even be considered,it would depend where the epilepsy is located as to what other bodily functions may be affected by surgery. There is a diet ,i think its called something like the ketogenic diet but from what ive read it is mainly more successful with children . You say you dont know anyone where you live, you may like to try a support group,find yourself a specialist if you havent already, specialists are better qualified and know more than the corner family doctor, besides jenny, if you dont look after yourself,who will. Keep in touch in this forum and im sure you'll find someone wholl try and help or guide you somewhere to go for help' good luck and best wishes

alisha

New User, Becoming EHEALTHy

Joined: 14 Sep 2004
Posts: 1
Location: Trenton Ontario

Hi Jennifer Posted: 09-14-04 09:49am


My name is alisha and I found out I had epilepsy when I was 20 years old. My daughter was about 5 months old and I found out by having a seizure on my first day at my new job. No one else in my family has ever had epilepsy or seizures for that matter and even doctors have told me that it's not a sure thing that epilepsy is hereditary. All I can say is count your blessings that you've found someone to love you for who you are, and don't worry about the baby until the time comes. In the meantime, I would suggest talking to your doctor about your concerns and maybe he will be able to answer more of your questions. Good luck.

Kathyalison

Experienced User , Rather EHEALTHy

Joined: 01 Apr 2004
Posts: 64

a Suggestion Posted: 09-14-04 20:21pm


Hi, i completely hear your concerns and have been in a similar situation myself. Before my husband and I got married 6 years ago, he came with me to see my neurologist to discuss our family planning as we had concerns about my meds etc.. Like you, we intended to wait several years, and we did. But my doctor told me that I should take folic acid everyday, a vitamin that helps prevent neuro-tubal defects in unborn children. It is recommended for all women of child bearing age to take 0.4mg each day. Because of my medications (lamictal and keppra) i've been taking 2mg each day. I have a 2 year old daughter who is in perfect health and is very bright and we are expecting another baby in march. I'm going for an ultra sound next week to confirm that everything is okay. My advise to you is talk to your doctor with your husband and come up with a plan, even if it's not something you're not planning on for a while. It's better to be prepared. Do you know if the medication you are on is considered safe or advisable for pregnancy? The worst would be if that you decided it was time to try, but then found out that you're not on recommended meds for pregnancy. You'd have to put things on hold until you got your meds sorted out and that would be really hard. Also, look into prenatal support groups in your area. I'm lucky that I live in the same town as my parents and that they're there to help. But I have also greatly valued the friends and contacts I made and developed prior to and at the beginning of my pregnancy. Good luck, keep us posted! Kathy

SHM85

New User, Becoming EHEALTHy

Joined: 02 Sep 2004
Posts: 34
Location: United States

Posted: 09-14-04 21:49pm


Hi, I just got married this past april and I moved far away from my friends and family and I dont know anyone here, so I know what your going through, sucks being lonely. But anyway my dad suffers from seizures, really bad seizures were he can get up to 3 a night if you misses his medication. Me and my siblings dont have seizures, neither does my dads side of the family suffers from seizures, so I dont think its heriditary. Hope that helped you some.

_anna_

New User, Becoming EHEALTHy

Joined: 19 Sep 2004
Posts: 5
Location: wales

Posted: 09-19-04 08:00am


There is no point in worrying about things with children until the time comes. I have a 3 year old son who had his first epileptic seizure when he was 7 weeks old and a 7 year old son who has adhd. I know how it is to blame yourself for things that happen but epilepsy doent run in my family at all but yet my little one has it. There was nothing different that I could have done during my pregnancy with either of my kids but unfortunatly they both have these conditions. They are a part of life and we all have to live with them. I enjoy every single day with my boys and love them both dearly. No matter what happens when you have children of your own just enjoy every moment cos they never stay babies for long and by worrying about the "what if's" you miss out on the most wonderful times you will have with them. Best wishes

kayakmom

Experienced User , Rather EHEALTHy

Joined: 21 Jun 2004
Posts: 252
Location: Conn

Thanks: 2

Thanked:0

Posted: 02-05-05 22:24pm


We never expected epilepsy to come into our lives with one child let alone 2. My husbands uncle had epilepsy but we were told it was not hereditary but a birth injury. My kids had perfect health early on, the normal toddler ear infections etc. Son was diagnosed at 7, but we know he had some at 5 and maybe earlier. Hind sight is better. My daughter had things developing around 12 or so, but it was ruled out until 15. There is often no way to predict. My mother in law has said she would not have had kids had she known. My thinking? My husband is the most wonderful man and husband. I cannot imagine a life without him. My children are my life. Yes, they have struggles and have to deal with this. I have other health issues. I had initially debated even having them because my dad had severe diabetes and made me feel so guilty that I felt I should not have them lest this be passed on. Guess what, no diabetes that we worried about. Life is a journey, sometimes the road gets really rough, but you keep traveling and it is amazing how even the hard things can cause good tihngs to come. You gain strength, you get a different perspective and appreciation that is lacking when everything is easy....