Any epileptic moms out there with young children?

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LJ-Bain

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I have been dealing with seizures for four years and have just recently been put on anti seizure medication.
The meds help but I still have to daily deal with things for the time being.

I have 3 young children. A 1 yr old, a 2.5 year old and a 5.5 year old.

I feel terrible that they have been forced to become so indepedant at such young ages.

I have drop zones for my 1 yr old when I feel like a seizure coming on...a playpen, his high chair and an exersaucer. I know he's safe when I'm unable to attend to him but I know he's not always happy about it.

My eldest is able to give everyone toast or yogurt in the morning as I often have a seizure upon waking and I feel badly that she has so much responsibility on her little shoulders. My middle child calls out her name for help in the morning instead of "mommy" since Mommy can't get out of bed.

I feel like I can't provide them the stability that they require because I can't always be there for them. They know I love them though. It's cute when they visit me in bed and play there since Mommy is "twitched up".

I can't change things but I try hard to remain positive and try to think that kids are way more adaptable than adults.

But still....I wish things could be different for them.
 
Are you the only adult? Do you have any nearby relatives? I have 2 children. One is 4 and the other is 6. I just had a seizure this morning with my daughter and we were alone. I was horrified because I was awake through it and no one was there to help but luckily my daughter is old enough to just watch a movie until mommy recovers. When I feel sensitive to having my seizures I stay at family or friends houses. It's so hard to ask for their help but what else can I do but pray for my kids safety and that someone is available and willing to help. Is your medication the thing that drains out your energy or are you having too many seizures. Maybe trying a new medication might help. I'll be praying for you.
 
Thanks for writing back. I do have an understanding husband but he has to work.
My in-laws are closeby and my parents live in a nearby city but I am mostly on my own.
Most of the time I do just pray everything is going to be okay while I'm unavailable to them.
I hear everything that is going on but I am unable to really move when I'm recovering for usually what is 15 mins to 1/2 hour. During a cluster though it's sometimes an hour.
I had a cluster of four seizures this morning but I did manage to pour some Cheerios in bowls for the kids before seizing. I do have warning before they come.
The medication does make me dizzy and sleepy but really it is the sheer quantity of seizures I get. I used to have 30 or 40 during my ovulation and the week before my period but at least with the medication I'm only having one small cluster and only 3 or 4 a day on top of that. So it is alot better.
I do have my in-laws to help getting my daughter to school on time but I'm mainly on my own since most people have to work and we can't afford to have the kids in daycare full time. We have my middle daughter in two days a week while my eldest goes to school two days a week so there are two days when it's just me and my baby.
I've just started on meds so I hope that soon we can play with the dosage or different meds.
Thanks for the prayers
 
Hello

I was just diagnosed a month ago but I have a 5yr old and 20month old. The drs don't want me to be alone with my kids because I don't know when I am going to have a seizure. What types of seizures do you have if you don't mind me asking.
 
Hi Maegan

What a roller coaster ride you must be feeling right now! I guess I'm allowed to be with my kids because I get simple partial seizures. However they do cluster and I am at times in bed for hours, or on the kitchen floor, living room carpet....
I hear everything that goes on but in my post state I can't really talk or move.
I do usually have a warning when they are going to come but sometimes I don't.
Is it just you with your kids alone mostly?
I sometimes have a mantra going through my head when I'm recovering
"at least they are safe, at least they are safe, at least they are safe".
Being a Mom is hard enough let alone dealing with seizures and caring for children.
 
Im a mother who has epilepsy and three young children, ages 7, 6 and 5 years old. Two are in school full time, our youngest is at home with me, til he starts kindergarten in august of this year. Im on Keppra XR, and I have simple partial seizures. My husband works first shift, 6am to 2pm, he leaves home around 5:30am, so Im the one who has to take the kids to school in the mornings. There have been mornings that I woke up, knowing I had a seizure. I do have my parents, aunt and grandparents that live in the same town, that I can call incase I cant drive. I know what you mean when you talk about your husband having to work and cant be there for everything that comes about when it comes to seizures. Have you spoke with your dr about how often these seizures are occuring? Maybe they would want to increase your medication or make some changes to make things better controlled for you.
 
Thank you for responding! I just recently started on the Keppra so I think we are just letting it be a low dose for 1 month and then play with the dose from there.
I do have them frequently.
My children deal with things beautifully but sometimes they get frustrated when I can't be there for them right at that moment. My 2yr old I often hear saying "wake up Mommy" as I'm recovering and all I can do is make reassuring noises since I can't talk yet.
Did you have epilepsy before your children were born? Did you have to deal with it when they were young?
 
I had seizures as an infant that my parents were not aware I was having, til I had a grand mal at the age of 18 months old. It was then that I was diagnosed with Epilepsy and put on medication. Ive been dealing with seizures all my life. My last grand mal seizure was in 2001. I became pregnant for the first time in September 2003 and since then, through out all of my pregnancies Ive been ok, with no seizures. I did however have a seizure a couple of months after the birth of our second son. It was due to not getting enough sleep with being up with a baby all night long. I had my mom help me out there after that happened. She started to come over and help me at night so I can get a better night's rest and not have another seizure happen again. So far, things have been going good with me. I did have a VEEG done almost a year ago and my husband stayed with the kids for that week I was doing that and things went ok. I came home to having more seizures, and had to get my medication level back to where it was before they stopped. My kids have seen me have seizures and at first they were scared. But now they know what happens and if they do see me have one, they know to get help. So far I havnt had a seizure at home where i was alone with the kids. They have occured when my husband was home with me and the kids. After I have a seizure, I get a really bad headache, and Im sore, since I stiffen up and jerk through out the seizure. I just feel really sluggish through out the rest of the day and Im just mostly tired and want to rest all day.
 
I am also on 1000mg of Keppra. Thankfully I have my husband through all of this. He has been my rock. I have been having a hard time coping with all of this. I was diagnosed a month ago I have Partial Complex seizures and I have been feeling so alone through all of this. I stumbled apon this website and so thankful I did I have people I can talk to that know what I am going through.


Do you ladies have any anger issues?
 
I have been kinda able to feel when they are coming on. I am not allowed to drive or bathe alone I am almost drowned a week ago in the tub. I feel nauseas (SP) all the time I constantly throw up I can barely keep anything down I am starting to lose weight. I like the Keppra but its giving me bad depression so I have to find a medicine to help with that. How do you ladies know when you are about to have a seizure.
 
sure, i will look u up on FB. My name is Kristin Ringleman-Clapper. :)
 
I have been kinda able to feel when they are coming on. I am not allowed to drive or bathe alone I am almost drowned a week ago in the tub. I feel nauseas (SP) all the time I constantly throw up I can barely keep anything down I am starting to lose weight. I like the Keppra but its giving me bad depression so I have to find a medicine to help with that. How do you ladies know when you are about to have a seizure.

Oh my goodness! How scary to almost drown! I guess it's only showers from now on. Nausea is a horrible thing. I feel only slight nausea but mainly it's dizziness. I find my appetite has decreased but throwing up is an awful side effect. I hope that is not a permanent side effect for you!
I do have issues with depression and yes, anger too but I can't say it's because of the Keppra. It's just from dealing with everything.
I know when I'm about to have a seizure because my head starts to feel tingly, my vision blurs, the right side of my face grimaces, my speech slurs and and I start to lose strength. I have no choice but to lie down and then my head tosses back and my eyes flicker and my body jerks and stiffens a bit but I don't pass out. Sometimes my memory is just a bit fuzzy.
It must be so scary for you to pass out.
At least I know what is going on even if I can't do anything about it.
 
I am also on 1000mg of Keppra. Thankfully I have my husband through all of this. He has been my rock. I have been having a hard time coping with all of this. I was diagnosed a month ago I have Partial Complex seizures and I have been feeling so alone through all of this. I stumbled apon this website and so thankful I did I have people I can talk to that know what I am going through.


Do you ladies have any anger issues?

I was so angry when I had to quit college because I was having too many seizures but it worked out for good because it forced me to stay home and raise my own kids rather than letting someone else pour themselves into my kids. Maybe some day I'll finish my education. I just don't like that I don't have a particular area of expertise in a career. My husband's so gifted and talented that I wish I could learn as easy as he could. I wish I could drive and get out of the house but the crime here in my hometown has been rising so in a sense I'm kind of grateful that I'm not out all by myself. I find that praying and reading my Bible brings the most comfort and strength through all circumstances.
 
MaeganT
"How do you ladies know when you are about to have a seizure."

I get the deja vu. It's a feeling of familiarity. My stomach gets notted up. I feel afraid. My heart is racing. Those sensations fluctuate. If they get too strong then it throws me into a seizure.
"Can I add you ladies on fb if you want to look me up Maegan Branch"

Absolutely.
 
I was so angry when I had to quit college because I was having too many seizures but it worked out for good because it forced me to stay home and raise my own kids rather than letting someone else pour themselves into my kids. Maybe some day I'll finish my education. I just don't like that I don't have a particular area of expertise in a career. My husband's so gifted and talented that I wish I could learn as easy as he could. I wish I could drive and get out of the house but the crime here in my hometown has been rising so in a sense I'm kind of grateful that I'm not out all by myself. I find that praying and reading my Bible brings the most comfort and strength through all circumstances.

It's frustrating how we have to turn our lives upside down just to cope with epilepsy. It is most unfortunate that you had to quit your education but I'm so glad that you could see the bright side of things and realizing that being a Mom full time is so important.
Over the years I've reduced my work to part time (2 days a week) but also my maternity leaves are a year long so that has eased the burden too. So 2 of my four years have been on mat leave!
Not being able to drive is HUGE. I hate it. We live a rural area so there isn't anything around so I do depend on my family alot. Luckily they live nearby.

Faith always helps, you are right!

Oh yes, I wanted to say that my mother-in-law went back to school in her forties and fifties after her kids had grown. It's not too unusual!
 
Oh my goodness! How scary to almost drown! I guess it's only showers from now on.
Well, IMO, showers can be just as dangerous. I had my first TC while I was on my way out of the shower. As I was going into the seizure, I fell onto the hot water faucet and lie under the hot water long enough while seizing to suffer 2nd and 3rd degree burns on my right arm, back and partly down my right side. I spent two months in the hospital and had to have numerous tests done plus debridement and skin graft surgeries. And I was 22 year old and living with my parents at the time.
I married a pilot after I recovered and we moved 1500 miles from home. We had two children and I was home alone a lot of the time. My two now grown children grew up witnessing numerous CP and some TC seizures, so now when they witness someone having a seizure, they do know what to do. I couldn't drive when they were growing up, so friends from church and school and other pilot's wives helped us out.

I do have issues with depression and yes, anger too but I can't say it's because of the Keppra. It's just from dealing with everything.

I've suffered from depression for years + epilepsy. Often times the two go together. Make sure you mention it to your neurologist.
 
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