Hello, first post here.

[naynay]

I am a 47 yo mother of three children and one daughter has petit Mal and my oldest daughter has grand mal seizures at least one per week. Though has had severe clusters many times also. How do you cope with this without going over the edge? My entire family has emotional problems and jump at any sound resembling a scream or a fall. I will wake from a deep sleep and fly to her so fast that I usually catch her before she gets injured now because of the guilt I feel if she gets hurt cause I don't make it in time. Then I shake and cry for awhile. You would think that after 8 years of this I would be more used to it. The pain of this seems so unbearable at times and makes me angry and depressed. I was glad to find this site in hopes that talking to others that are going through the same things might help me to learn better coping skills for this if that is possible.

 

[Crazy Monkey]

Hi Naynay

Welcome to CWE!!!

Sorry to hear about your situation.

You have come to the right place for support, there are plenty of parents on this site caring for children with epilepsy. I am at the other end of the spectrum as I am the one having the seizures. I can't advise you on how to cope as a parent but I am sure some of the parents will be along with some advise shortly.

I am 30 years old and have had absence seizures everyday since I was 10, my parents were unsupportive and pretty much acted like the seizures didn't exist, I really could have done with some parental protection as a kid instead of doing things liking crossing busy roads in a zombied state. I wish I could have had parents that cared for my seizures rather then burying their heads in the sand, it sounds like you are doing an excellent job in looking after your daughters, but everybody needs help and an understanding ear from time to time and that is what this forum is best at!!!!!

Take care

Crazy Monkey

 

[tinasmom]

NayNay -
I would like to welcome you to this great forum. I have been connected to E for over 20 years with the diagnosis of my oldest daughter. I am now raising my granddaughter who was diagnosed a little over a year ago. Luckily, she has been seizure free for a year. I can understand how you feel as we lost my daughter 2 years ago to a seizure and when I saw my granddaughter have her first seizure, my heart sank. I could not sleep at night and am always afraid that she will die in her sleep also. We have purchased a video baby monitor and we have a safety pillow for her.

 

[Bernard]

Hi naynay, welcome to the forum. :hello:

I can totally relate to what you are going through. That was me about 4 years ago or so. My wife had TCs once a week with atonic (drop attack) and myoclonic seizures almost daily. I was a nervous wreck and it seemed like the sun would never shine through the dark clouds hanging over us.

There really isn't anything I can offer you to mitigate the anxiety/stress. The only thing that works for me is to solve the problem - ie. get the seizures under control.

Fortunately, my wife responded to Dilantin and we appear to be finally putting the genie back in the bottle.

Maybe these links will help:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[naynay]

Crazy Monkey,
I am so sorry that you had to go through such a hard thing like this alone! That is so not fair. You must be a very tough person by now. God is definantly watching out for you for you to have made it this far all alone. I hope you have someone in your life now to be there for you. Thanks for your reply and take care.

Laura,
My husband and I got together in our teens and so at 17 he was the first seizure I'd ever seen. He only had one (gran mal) every few months, but very scary just the same. By the time my kids were 2, 7, and 8 yo his seizures stopped and he never had one again. I thought the nightmare was over. Then one morning I walked into my daughters room and she was having one. I was in shock, I screamed at her to stop and told her " this is not funny!" Thinking she was acting or something, I was in total disbelief. It's been a roller coaster ever since. My younger daughter would just look up and stare for a few seconds for many years, way before this happened but we thought she was either thinking or daydreaming since it only lasted a few seconds and didn't interfere with her life any. But when she got older she would blink while doing it and it would last a bit longer so took her and found out it was petit mals. She refuses to take any meds though because she says she would rather 'blink' once in awhile than deal with the side effects she felt when medicated. But sadly she can't drive.

I'm so sorry about your daughter! OMG that is so scary. I wouldn't be able to sleep either, so so sad. so not fair. I sure hope your grandbaby's seizures go away the way my husbands did. May God keep you and strenthen you as you deal with this horrible pain​

 

[naynay]

Thanks Bernard,
After trying depacote, tegretol, zonegran & lamictal we finally had them down to one per week with the VNS + Keppra but they recently went out of control again. We had the VNS turned up another notch and upped the Keppra again the day before yesterday and so far only one partial- thank God. But even at one per week It keeps me always nervous and waiting and I can't even go out and get me a job unless I can find me a night job. My husband has had to be the sole supporter of the home all these years but this year has gone through cancer treatments and I 've had to take care of both of them and can't go to work and leave her. He has gotten alot better now and has earned some money but is still very weak. I haven't worked in over 15 years and have no job training so this has been almost unbearable. Thanks for the links. I will go check them out right now.

 

[RobinN]

Hi naynay - so sorry to hear what a challenge you are faced with.
I want to welcome you to CWE and hope that you find this to be a place of comfort.

 

[Crazy Monkey]

OMG Naynay you really are being put to the test at the moment with your 2 daughters and your husband to care for. No wonder you are looking for some help and support at the moment.

Your daughter that has petit mal seizures sound like they are similar to mine, I have absences that last about 20 seconds, sometimes they can be quite aggressive and I can have one after another after another which leaves my head aching, I generally have between 20 and 50 a day, I take Lamictal for them, it hasn't managed to totally control them but it has reduced them by half.

 

[naynay]

Thank you RobinN, I hope so too.

Crazy Monkey,
My daughter's have gotten worse since she is grown and moved out. She was on Lamictal too but hated it. What's really weird though is that when she is at work concentrating on her job she doesn't have them. She only has them when sitting and relaxing or just talking casually.

 

[Crazy Monkey]

I find that I have most first thing in the morning due to still being sleepy, I have to walk to work and I often wonder how I get there in one piece, after about 9:30am and a couple of coffees later to wake me up, they seem to subside unless I am having a particularly stressful day, they then reappear in the evening when I start to relax and get tired, I have a few other triggers but stress, tiredness, bright static high wattage lights and noise seem to be the main ones. I also have them when chatting to people, which can be embarrassing because I forget what I was saying

When I have EEG's and start to get relaxed, this always shows seizure activity.

I was told by my neuro that If I didn't grow out of them by my late teens that I would probably have them for life and to expect them to get worse at some time in the future, they are starting to get more frequent plus they seem to be evolving.

In what way are your daughters getting worse?

 

[alivenwell]

Thank you RobinN, I hope so too.

Crazy Monkey,
My daughter's have gotten worse since she is grown and moved out. She was on Lamictal too but hated it. What's really weird though is that when she is at work concentrating on her job she doesn't have them. She only has them when sitting and relaxing or just talking casually.

It sounds like being busy is a stress reducer. I exercise with an active dog when I'm not at work. She's extremely supportive.

 

[tinasmom]

NayNay -
My daughter and granddaughter's seizures are hereditary. My ex-husband had E and outgrew it at about 20. It runs on his dad's side of the family. I had always hoped that Tina would outgrow hers also. I guess that just wasn't God's plan. I believe that God gave me a mission when he took my beautiful daughter from this earth and it is to help others with E however I can. I could've easily slipped into a deep depression and carried my anger with me forever, but instead I turned into a passion to help others. I tell people that if I can help to save one life of someone with E, my daughter's death will have a purpose. He has put people in my life that are just totally amazing and most of them are right here on this forum.

I can understand why your daughter doesn't want to take the meds because of the side effects. Nicole had horrible behavior problems when her Lamictal was at the highest dose. Our doctor refused to believe that her behavior could be a side effect, so we found another doctor. This doctor has been a God send, she reduced the Lamictal and the behavior problems were reduced dramatically. I have discussed other options with her besides meds and she has been open to everything except Neurofeedback. The only reason she is hesitant with Neruofeedback is because there has not been enough documented medical research. I am also investigating several diet options listed here.

Nicole just recently finished a Neuropsych eval and this doctor did suggest that we search for places doing research on Neurofeedback. I'm going to start researching this option.

I also found out that she may have Fetal Valproate Syndrome which is caused by mothers taking Depakote while pregnant. This could be part of her behavior problems and learning disability. I am looking for a reputable place to have her tested for this. Well going through my daughter's medical records, I realized that they did not give me all of her records, they only gave me as far back as 2001. I have requested all of her medical records prior to 2001.

We are always here for you no matter what. I can understand guilt feelings because I feel that if I knew what I know now about E, my daughter might still be alive. She was taking 23 pills a day and still seizing. When she had told her Neuro that she had a seizure that lasted for 5 minutes, he told her that was impossible because she would be dead. This doctor is a real idiot and unfortunately he is our only Neuro with the Health System that most employers go with. I could go on and tell you more horror stories of this man who calls himself a doctor. I guess that I will have to post a blog on my MySpace to let people know that not all Neuro's know about E.

My prayers are with you and your family. God Bless.

 

[Meetz1064]

Hi and

welcome to CWE, Naynay.

I'm sorry to hear of your troubles. It sounds like you've got your hands full, but you've definitely found the perfect place for support.

Feel free to check out all the nooks and crannies in the AWESOME house that Mr B has built for all of us. There's even a Padded Room! :roflmao: That's how some of us do cope here......we use it to rant and rave....Also, there are quite a few Social Groups here that you can join, and those might be of some benefit to you to. Speber's Auditorium--full of wonderful music for your listening pleasure and comfort as well as your comments.

And we talk to each other A LOT. That helps us all........at least me. :bigmouth::bigsmile: So feel free to join in.

Take care.

Meetz
:rock:

 

[skillefer]

Hi NayNay! Welcome to CWE. As you can see, a fairly friendly place. Feel free to ask questions, vent, or just chime in. Sounds like you're going through some tough times. I have grand mals. I went 9 years without them, and then they hit about every 2weeks...now I can go up to 2 months without. I'm getting my life back, slowly but surely. I've had seizures for a long time. The thing that I remember the most though, is how my mom would panic or look stressed out when I finally came out of it. It made me feel guilty. To this day, I still feel guilty every time I have a seizure. Odd, I know.....feeling guilty over something you really can't control.....or at least have minimal control over... Anyway, I guess what I'm trying to say is to try to be calm around your kids when they do seize. How you react can effect how they feel about E. Anyway, this site is fantastic. So feel free to wander the house.

 

[naynay]

I find that I have most first thing in the morning due to still being sleepy, I have to walk to work and I often wonder how I get there in one piece, after about 9:30am and a couple of coffees later to wake me up, they seem to subside unless I am having a particularly stressful day, they then reappear in the evening when I start to relax and get tired, I have a few other triggers but stress, tiredness, bright static high wattage lights and noise seem to be the main ones. I also have them when chatting to people, which can be embarrassing because I forget what I was saying

When I have EEG's and start to get relaxed, this always shows seizure activity.

I was told by my neuro that If I didn't grow out of them by my late teens that I would probably have them for life and to expect them to get worse at some time in the future, they are starting to get more frequent plus they seem to be evolving.

In what way are your daughters getting worse?

I'm sorry it took me so long to get back to you. It's been a busy weekend and I've been really depressed. (binging on sugar is always follwed by depression for me) but that's another story.

When my daughter was younger it was only a second or two of staring a couple times a day but now her absences are very much like what you have described yours to be. Also when riding in the car she has to wear dark sun glasses when the sun flickers through the leaves on the trees or she has a full blown grand mal.

 

[naynay]

It sounds like being busy is a stress reducer. I exercise with an active dog when I'm not at work. She's extremely supportive.

My oldest daughter and I have started walking I hope it helps her too. I know I feel alot better when I walk than when I don't. Plus it gives us quality time together.

 

[naynay]

NayNay -
My daughter and granddaughter's seizures are hereditary. My ex-husband had E and outgrew it at about 20. It runs on his dad's side of the family. I had always hoped that Tina would outgrow hers also. I guess that just wasn't God's plan. I believe that God gave me a mission when he took my beautiful daughter from this earth and it is to help others with E however I can. I could've easily slipped into a deep depression and carried my anger with me forever, but instead I turned into a passion to help others. I tell people that if I can help to save one life of someone with E, my daughter's death will have a purpose. He has put people in my life that are just totally amazing and most of them are right here on this forum.

I can understand why your daughter doesn't want to take the meds because of the side effects. Nicole had horrible behavior problems when her Lamictal was at the highest dose. Our doctor refused to believe that her behavior could be a side effect, so we found another doctor. This doctor has been a God send, she reduced the Lamictal and the behavior problems were reduced dramatically. I have discussed other options with her besides meds and she has been open to everything except Neurofeedback. The only reason she is hesitant with Neruofeedback is because there has not been enough documented medical research. I am also investigating several diet options listed here.

Nicole just recently finished a Neuropsych eval and this doctor did suggest that we search for places doing research on Neurofeedback. I'm going to start researching this option.

I also found out that she may have Fetal Valproate Syndrome which is caused by mothers taking Depakote while pregnant. This could be part of her behavior problems and learning disability. I am looking for a reputable place to have her tested for this. Well going through my daughter's medical records, I realized that they did not give me all of her records, they only gave me as far back as 2001. I have requested all of her medical records prior to 2001.

We are always here for you no matter what. I can understand guilt feelings because I feel that if I knew what I know now about E, my daughter might still be alive. She was taking 23 pills a day and still seizing. When she had told her Neuro that she had a seizure that lasted for 5 minutes, he told her that was impossible because she would be dead. This doctor is a real idiot and unfortunately he is our only Neuro with the Health System that most employers go with. I could go on and tell you more horror stories of this man who calls himself a doctor. I guess that I will have to post a blog on my MySpace to let people know that not all Neuro's know about E.

My prayers are with you and your family. God Bless.

Renee and Jennifer's are hereditary too I suppose since my husband had them for for so long. He never knew his Mother so maybe from her side of the family. I really don't know anything about all this either and do feel guilty about that. I never had a computer until about 3 years ago and have been teaching myself to use it so far. But now since I am good at googling and researching I am trying to learn all I can in my spare time. This site has been a God send to me. I've never even heard of some of the things I'm seeing here. It's all so overwhelming right now. I'm sorry you had to go through the pain of the incompetent doctor! I feel like I'm at the mercy of mine and do not know if he's good or not?!

Thanks for the support.

 

[naynay]

Hi NayNay! Welcome to CWE. As you can see, a fairly friendly place. Feel free to ask questions, vent, or just chime in. Sounds like you're going through some tough times. I have grand mals. I went 9 years without them, and then they hit about every 2weeks...now I can go up to 2 months without. I'm getting my life back, slowly but surely. I've had seizures for a long time. The thing that I remember the most though, is how my mom would panic or look stressed out when I finally came out of it. It made me feel guilty. To this day, I still feel guilty every time I have a seizure. Odd, I know.....feeling guilty over something you really can't control.....or at least have minimal control over... Anyway, I guess what I'm trying to say is to try to be calm around your kids when they do seize. How you react can effect how they feel about E. Anyway, this site is fantastic. So feel free to wander the house.

I am such a mess after wards that I know I make them feel bad. I have so many regrets about how I've handled this, I really suck at it! Thanks for the heads up though, you are so right.


Meetz,Thanks for the welcome.

 

[tinasmom]

NayNay -
I have learned that if your gut instinct tells you to find another doctor, start looking. I know that insurance companies hold us back from using doctors we find that we know would be the best.

We are all in this together, learning new things everyday about E. Have you checked to see if you have a local Epilepsy Foundation affiliate? Our foundation is what helped me the most.

 

[skillefer]

*chuckle* I'm sure my mom would say the same Nay Nay. All we can do is give it our best right?