Hi just introducing myself

[Taylors_Mama]

My name is Jennifer I am 22 years old. My one year old daughter has just started having petit mal seizures last week. I am really looking to get more information adn talk to people who know more about this than I do. So far the doctors cannot give me any answers as to what is causing these seizures. She is scheduled to have an EEG done next week and an MRI as soon as the hospital calls me to schedule it.
I am married but at the same time allone and scared. My husband is currently deployed to South Korea in the Army. So I am here making all the decisions and everything. Scared out of my mind. All the information I am getting from the neurologist at this point is dont panic at the rate she is haveing these seizures and the length she will not have any brain damage. I am just trying to learn as much as I can so I can help her.

 

[Georgiagirl88]

Hi Jennifer,

So sorry to hear about your little one. You will find soooo much support here and there are alot of parents of children with epilepsy here as well. I am sure they will be of great help to you. I am sure you are scared being on your own right now. Do you have a support system..friends or family to share with and help you? I know you will find help here. I am 41, married and a Mom of 2 teenagers and recently diagnosed with epilepsy. I will keep your little one and you and your husband in my thoughts and prayers. I am sure it must be hard to be separated right now. We currently have some family members in the Military as well. So Tell your Husband Thank you for his service for our country! Feel free to ask alot of questions..and even unload if you need to.
Welcome to the group!

Michelle : )

 

[Taylors_Mama]

My whole family lives around me but I am kinda more scared to tell them what is going on. I think they will only stress me out more. I have a huge family and they will all be calling me telling me horror stories and that is exactly what I dont need right now. So for now only my mom adn husband really know what is going on. My husband is having a really hard time with it because he is away right now. He has been gone since last november and will be home this november 5th.
I really have no idea what to expect from the tests they are going to do on her. THey are giving her an EEG she has to be sleep deprived and an MRI that they are putting her under for. I am just really freaked and kinda alone in this. I would really like to know more about the testing and what they are looking for at least for now.
Thanks so much

 

[skillefer]

Hi Taylor's Mama! Welcome to CWE. You came to the right place. As for the EEG, they usually glue a bunch of little things that look like suction cups ( I think....it's been a while for me, and she's an infant...so they might use a cap...)to her head. Then, they'll give her different stimuli, and while she's taking in the stimuli, the EEG machine will see which parts of her brain are reacting, and how. As for the MRI, it's very similar to having an X-Ray taken. You lay down, they slide you into a barrel shaped machine, and it takes pictures of the brain. They're going to sedate Taylor because she's so young, and for the MRI you have to hold still.
Michelle's right. There's lots of parents here that have kids with epilepsy, spouses, as well as people with epilepsy here.
The thing is, to try to figure out why your baby is having the petite mals. Did she have a really high fever at any time? Is there a family history of epilepsy? (Some families hide it and never talk about it...so that can be hard to track down.) Did she have any head injuries? Those are things the neurologist is looking at, as well as the EEG and MRI results.
I have epilepsy that's called idiopathic. That means they don't know for certain what caused it. But I do know that my seizures didn't start until after I hit my head on the floor when I was 3 and bouncing on the bed, which I'd been told not to do. I also have a great uncle on my mom's side. I have what are called grand mals. They can be scary to watch. At one time, when I was a teen, I also had petite mals. However, I outgrew them. And yes, that is possible. Since being diagnosed, I was tested and found to be eligible for the gifted program in school, and ended up graduating with a master's degree. So trust me, it's not all gloom and doom. You're lucky that they caught it early. It gives you plenty of time to learn about it. Feel free to ask any questions, vent, or just chime in. We're glad to have you here. And remember...you're not alone. We're here for you and your hubby.

 

[joey]

hi

 

[Taylors_Mama]

I know my aunt has epilepsy but she got it from her dad's side of the family which is not blood related to me or my daughter. She has the grand mals too it is really scary. So I dont think that is where Taylor is getting it. She hasn't bumbed her head that I have really noticed but she is a one year old she falls and crashes all the time. Hard to really pinpoint, but I dont think any more than a normal child. The doctor thought that hers could have been because of a fever, she has had multiple ear infections but she never ever has a fever. So I am lost there. They also said that the infection itself could be causing. So many posibilities.
Im not so worried about her having a normal life, be smart and learn just like all other children. She is actually pretty advanced for her age. She has a pretty extensive vocabulary for a one year old. I know it is a completly treatable condition so that makes me feel a million times better. I just dont want other people to treat her differently because of this.
I really appreciate how wonderfully nice and informative you guys are. I was kinda scared to post on here because she hasnt officially been diagnosed with epilepsy yet.

 

[skillefer]

*chuckle* No worries. Sounds like Taylor is one smart little lady, and that you are a very caring parent. If she does have epilepsy, she'll probably get teased a little about it in school. I think most of us here did. But then, that's in a way to be expected. Children tease other kids who are different from them. Sorry to say, but it's true. People like the security of being around people who are like them. I always tell parents to be careful how they react to the seizures in front of their kids....the reason being, that when I was young and seized, my mom would get worried and filled with anxiety. It made me feel guilty for having the seizure. I know...silly to feel guilty something like that. My dad on the other hand, would smile, crack a joke, and in general just be very laid back. I felt safe with him.... So if Taylor has seizures...and I'm hoping she doesn't...just remember that how parents react to things can effect how kids feel about themselves. Oh! And try to think of it as being no different then diabetes or asthma. If you find the right treatment, and take the right precautions, she should be able to have a perfectly wonderful life. Hope this helps...

 

[Elaine H]

Hi Jennifer

You sure picked the right place to come along to! The guys on here are fantastic, and have just got me through my second lot of brain surgery for my epilepsy.

I was wondering if your daughter may have been a forceps delivery, only that's what caused my epilepsy to develop, even if I was 23 when I had my first diagnosis, I know that they try not to use forceps any these days as they can damage soft tissue on the brain's surface when the baby's head is so soft.

It could be that she will just grow out of this, but I know a lot of the guys on here have kids with epilepsy, or know people that do, so I'm sure you will get all your answers once the MRI and EEG are done, they are nothing to worry about, I think they play music in the MRI scanners these days.

I hope you keep us all posted as to how it goes, and how she gets on. You'll only get help and support on this wonderful website, I know I have.

Best Wishes

Elaine x

 

[Nancy]

Hi Jennifer ~ You're getting good answers...... computers are such a blessing !
I was in my 40's on an Air Force base in North Dakota when I was diagnosed 18 years ago.

We'll be praying for your family - especially your daughter.
You're so fortunate to have found this place.

 

[tinasmom]

Welcome Jennifer -
So glad you are here. Sorry to hear about your daughter. I've been dealing with E for 20 years. My daughter was diagnosed at the age of 6 and my granddaughter has also been diagnosed at the age of 6 with E. In our case, it is hereditary (ex-husband's side of the family). My granddaughter has had an EEG, MRI and PET scan. Our neuro wants to do another MRI with a better machine so we will be scheduling that soon. You can research the testing on the Internet which will help you to better understand. You can also research any meds that are prescribed. If you type (drug name) prescribing information into a search, it will give you some great information.

Your daughter is a little doll.

 

[Bernard]

Hi Jennifer, welcome to the forum. :hello:

There is a lot of good info for people new to epilepsy in the threads listed here: epilepsy 101

We're here for you any time you need to talk.

 

[morgan381]

Hi Jennifer,

Welcome to CWE. You've found the right place for information and support!

I'm sorry to hear about your daughter. I'm sure it's really scary to deal with on your own. But you're doing all the right things for Taylor. You've got the right attitude about this being a managable condition... I agree with what Skillefer said, the way you react will shape her attitude. I'm 27 and was diagnosed 7 years ago. I've had all the tests and the doctors don't know what caused mine. I have complex partials (space-out) and sometimes they will progress until I have a tonic-clonic. My husband gets so anxious and irritable when I start having the partials that he causes my kids (I have 3) to be scared and anxious. All this makes me feel guilty for having seizures.

I hope you find all the answers you need. And if you ever just need to blow off steam, we'll listen.

 

[Taylors_Mama]

*chuckle* No worries. Sounds like Taylor is one smart little lady, and that you are a very caring parent. If she does have epilepsy, she'll probably get teased a little about it in school. I think most of us here did. But then, that's in a way to be expected. Children tease other kids who are different from them. Sorry to say, but it's true. People like the security of being around people who are like them. I always tell parents to be careful how they react to the seizures in front of their kids....the reason being, that when I was young and seized, my mom would get worried and filled with anxiety. It made me feel guilty for having the seizure. I know...silly to feel guilty something like that. My dad on the other hand, would smile, crack a joke, and in general just be very laid back. I felt safe with him.... So if Taylor has seizures...and I'm hoping she doesn't...just remember that how parents react to things can effect how kids feel about themselves. Oh! And try to think of it as being no different then diabetes or asthma. If you find the right treatment, and take the right precautions, she should be able to have a perfectly wonderful life. Hope this helps...

Yeah I am familiar with treating her with all sorts of things. She has been one sick little baby. She has athsma takes 2 different inhalers and a nebulizer. She has had 7 ear infections in the last 6 months (talking about doing tubes) and multiple upper respiratory infections and RSV twice. She is a trooper. You would never know she was sick either she behaves completely normal. She really is a wonderful child.
That is one thing too I am trying to handle these seizures calmly, trying not to freak out to bad. I have seen my aunt have the grand mals and that is kinda scary so I think that is helping me stay calm that she is only having short petit mals. Not nearly as scary.

 

[Taylors_Mama]

Hi Jennifer

You sure picked the right place to come along to! The guys on here are fantastic, and have just got me through my second lot of brain surgery for my epilepsy.

I was wondering if your daughter may have been a forceps delivery, only that's what caused my epilepsy to develop, even if I was 23 when I had my first diagnosis, I know that they try not to use forceps any these days as they can damage soft tissue on the brain's surface when the baby's head is so soft.

It could be that she will just grow out of this, but I know a lot of the guys on here have kids with epilepsy, or know people that do, so I'm sure you will get all your answers once the MRI and EEG are done, they are nothing to worry about, I think they play music in the MRI scanners these days.

I hope you keep us all posted as to how it goes, and how she gets on. You'll only get help and support on this wonderful website, I know I have.

Best Wishes

Elaine x

Nope no forceps she had a completely normal delivery. I didnt want to use any of that kind of thing. I was afraid of her getting hurt. Especially the scution. I was induced at 39 weeks for high blood pressure. I was only in labor for 6 hours and 14 minutes, pushed for 14 minutes and she was here. The doctor didnt even make it to the room the midwife delivered her, the doctor came in a few minutes later. She was 8lbs 1 oz and 19 inches. Perfect little angel!

 

[Taylors_Mama]

Welcome Jennifer -
So glad you are here. Sorry to hear about your daughter. I've been dealing with E for 20 years. My daughter was diagnosed at the age of 6 and my granddaughter has also been diagnosed at the age of 6 with E. In our case, it is hereditary (ex-husband's side of the family). My granddaughter has had an EEG, MRI and PET scan. Our neuro wants to do another MRI with a better machine so we will be scheduling that soon. You can research the testing on the Internet which will help you to better understand. You can also research any meds that are prescribed. If you type (drug name) prescribing information into a search, it will give you some great information.

Your daughter is a little doll.

We havent been perscribed any medication yet. I am kinda scared about the side effects of the meds. I will be researching everything very extensively. I want to make sure I know as much about all of this that I can. I want to be able to take care of her. And eventualyl teach her about everything too so she will know what is going on.

 

[Taylors_Mama]

Hi Jennifer,

Welcome to CWE. You've found the right place for information and support!

I'm sorry to hear about your daughter. I'm sure it's really scary to deal with on your own. But you're doing all the right things for Taylor. You've got the right attitude about this being a managable condition... I agree with what Skillefer said, the way you react will shape her attitude. I'm 27 and was diagnosed 7 years ago. I've had all the tests and the doctors don't know what caused mine. I have complex partials (space-out) and sometimes they will progress until I have a tonic-clonic. My husband gets so anxious and irritable when I start having the partials that he causes my kids (I have 3) to be scared and anxious. All this makes me feel guilty for having seizures.

I hope you find all the answers you need. And if you ever just need to blow off steam, we'll listen.

Yeah I dont want to put more stress on her from me freakingout when she is having theses seizures. Stress can only make it worse. I am tryint o stay calm and level headed. I know my aunts husband always makes her feel bad about having seizures. Tha makes me so angry it si not her fault or your fault that you are having them. People are just ignorant about it and then get scared and make the people around them feel uncomfortable or embarrased about things that are beyond their control.

 

[ashmstng]

Hello Taylors Mama!

You are the right place. Just ask and I am sure you will get your answers. I am sorry about your one year old especially that young. My seizures started at age 3. I really hope you get the answers you are looking for on here and also the support. We are all here for you. I will be praying!

Take care!:hello:

 

[tinasmom]

As a mom, I have learned to always go with my gut instinct. If you can find an Epileptologist, that would be the best. I have learned that sometimes, I know more about Epilepsy than the Neurologist does. I find this to be very common with a lot of people I talk to. Some Neurologists just keep adding meds instead of trying to find the reason behind the seizures not being controlled. My daughters Neuro once told her that she was faking her seizures and needed to see a Physcharist (sp ?). The shrink said that she was not faking seizures.

 

[Meetz1064]

Hello there, Taylor's Mama!

You've found a wonderful place to be, here at CWE!!!

Mr B (Bernard) has made us a wonderful home here.......

Make sure you check out the epilepsy 101 thread that Bernard gave you to ook at. There's LOTS of good stuff there.

I'm sorry you're going through this with Taylor. Hopefully you'll find the cause of the petit mal seizures, but please realize that you may not, either. It is fairly common to NOT know the reason or the cause for a patient's ep.

Skilly's right; since Taylor's so young, they probably will use a cap on her to get on the leads on her head. And sedating her for the MRI is necessary so that they can get an accurate reading. I'm sorry that you have to go through it without your hubby though. That part sucks beans. But, you have us to lean on......and ask as many questions as you want. We'll be here for you, I promise.

Good luck.......

Meetz