My Aley
10-23-2003, 04:23 AM
Does anyone else experience more than one type of seizure? And, does anyone ever get Aura's?? My daughter Aley doesn't always but, sometimes. She has definately the Absence, Complex Partial, Partial Lobe and Temporal Lobe seizures. She sometimes gets a tingling feeling in her feet and tummy. She will rock herself on her pillow. She would cry out from her bed to be carried to the bathroom at night because she couldn't walk and shortly would have a seizure...not always though. My family is hoping that these will go away after puberty(sp?). I just pray they become controlled and of course that they go away. She is so special and we love her so much. It is so hard to see her go thru this. My pregnancy with her was stressfull and she had the cord around her neck. We are also worried about our 10 month old because the cord was wrapped twice and she developed pneumonia but, we brought her in 4 times before they took us seriously.........so 2 weeks later and her turning blue numerous times, she was admitted for it and her o2 was at 80%. 95% is what they normally don't want people to go under. Lord knows how long she was at that o2 level. So, they told us she may be at risk for seizures in the future. Not what we wanted to hear. Military Dr's!!!!!!!!!!!! Some are good but, others you really have to deal with a lot of ego. Hope to hear from more of you and to see if it is common to have different seizures. Aley has wondered outside twice......scarry being we are in Alaska and it gets really cold here in the winter!! Any of you do that also? What precautions have you made to prevent you from doing so or walking around. Mine also will walk in circles for hours in the living room until we notice her and she comes out of it and we take her back to her room. Sorry for the long post, I am just so excited that you guys are here!!! Thank you!!!!!!!!!!!
Love, Sandra & Derek
Love, Sandra & Derek
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KittyMom
10-23-2003, 01:28 PM
Welcome sweetie!! We are glad you found this board also. Everyone here is very helpful!!
Yes, it is common to have more than one type of seizure. I have 3! Simple partial, partial complex, and gran mal. I have auras too. Most of the time I know when they are coming (98%) but then again I don't know when the simple partials are coming. They are peti mals or absence seizures. I go out and come back in 30 seconds or less later. I started out with just one seizure and have now progressed into all of these. Not to be scared, this doesn't happen to everyone but this is just my luck....ha ha. If you need to talk anymore about this or want to know what your daughter might be feeling then let us know. We have all sorts of useful information as everyone on here has a different type of seizure or a different type of feeling and many many different experiences. It is great.
God Bless you and your family! I hope things will get better very soon. Oh, and I know what you mean about those military doctors. My husband was USAF for 9 years. I miss the "free" part of it but I love the civilian doctors.
God Bless,
KittyMom
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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
Yes, it is common to have more than one type of seizure. I have 3! Simple partial, partial complex, and gran mal. I have auras too. Most of the time I know when they are coming (98%) but then again I don't know when the simple partials are coming. They are peti mals or absence seizures. I go out and come back in 30 seconds or less later. I started out with just one seizure and have now progressed into all of these. Not to be scared, this doesn't happen to everyone but this is just my luck....ha ha. If you need to talk anymore about this or want to know what your daughter might be feeling then let us know. We have all sorts of useful information as everyone on here has a different type of seizure or a different type of feeling and many many different experiences. It is great.
God Bless you and your family! I hope things will get better very soon. Oh, and I know what you mean about those military doctors. My husband was USAF for 9 years. I miss the "free" part of it but I love the civilian doctors.
God Bless,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
My Aley
10-23-2003, 02:51 PM
KittyMom,
Hey, thanks. Good to know that it is normal to have more than one type. She started on her tegretol yesterday and I have noticed that she is having a number of small seizures today and last night. I called the Dr to make sure she was okay and he said that it can happen. Wish someone would've warned me before. It said that the side effects were lack of appetite(sp?)......she is eating my house!!! lol One minute she is tired and lays down and the next, she gets up wired and wanting to play. I do want to know what she is feeling. I don't understand from her point of view what this is like. All I know is how I feel and that it does bother her at times. We have been descriminated against here on base with me doing daycare. Even though she normally has them at night. Do you all find that you tend to get them more during certain times of the day? They thought that I shouldn't do daycare with her having seizures......I wouldn't be doing it if I couldn't handle it. Some people are so rude. Oh well. But, KittyMom if you have any info and if you don't mind, please tell me about what it is like for you all and the different aura's.......so you don't get the tingling my daughter gets? Her Dr tried telling me that it is rare to have aura's and that ost people have them and don't know that they are coming. I read last night on the net that it is common and some do know before they have one. Like I said, darn Military Dr's! They read a textbook and think that they know everything. They go by what is said in their books and then think that there are no exeptions or other symptoms. Her pediatrician is good though and he has tried for a whole year to figure this out and to help her. Well, should get going, but I reall thank you so much for the reply and hope to hear more from you!! Thank you!!!!!
Love, Sandra & Derek
Hey, thanks. Good to know that it is normal to have more than one type. She started on her tegretol yesterday and I have noticed that she is having a number of small seizures today and last night. I called the Dr to make sure she was okay and he said that it can happen. Wish someone would've warned me before. It said that the side effects were lack of appetite(sp?)......she is eating my house!!! lol One minute she is tired and lays down and the next, she gets up wired and wanting to play. I do want to know what she is feeling. I don't understand from her point of view what this is like. All I know is how I feel and that it does bother her at times. We have been descriminated against here on base with me doing daycare. Even though she normally has them at night. Do you all find that you tend to get them more during certain times of the day? They thought that I shouldn't do daycare with her having seizures......I wouldn't be doing it if I couldn't handle it. Some people are so rude. Oh well. But, KittyMom if you have any info and if you don't mind, please tell me about what it is like for you all and the different aura's.......so you don't get the tingling my daughter gets? Her Dr tried telling me that it is rare to have aura's and that ost people have them and don't know that they are coming. I read last night on the net that it is common and some do know before they have one. Like I said, darn Military Dr's! They read a textbook and think that they know everything. They go by what is said in their books and then think that there are no exeptions or other symptoms. Her pediatrician is good though and he has tried for a whole year to figure this out and to help her. Well, should get going, but I reall thank you so much for the reply and hope to hear more from you!! Thank you!!!!!
Love, Sandra & Derek
robinrobin
10-23-2003, 06:01 PM
hi, i was trying to find out how old she is. i am so sorry u and your husband are going thru this. it must be so scary to watch your daughter do this. I think alot of people have auros. I wish i could explain/ all i can say is i say the word "sick" . I feel sick. i feel like i have a fever sometimes- but dont. sometimes my neck muscles hurt. but then i also have chronic fatigue syndrom, so sometimes i dont know what symptom is coming from what. i do know that medicene has been a blessing. i was on tegretal, but it didnt help with the headaches so i am on depakote now. it makes me very tired though. ((())
My Aley
10-24-2003, 01:29 AM
RobinRobin.......my daughter Alexis(Aley) is 4 years old. She will be 5 in December. I first noticed something wrong when she was about 2 and a half when my Mom called me at work crying that she couldn't wake her. She told my Mom that she was sleepy, which was not common for her to nap at that time. I brought her in to the Dr and after he took off her clothes and had her walk to me, we noticed that she was dragging on her left side. After that, for about 3 weeks straight, she would have seizures where she would be walking and she would just pass out and drop to the ground. It was terrible!! I was a single parent at the time and had no insurance. I really didn't care what the cost was, I just wanted my baby back. As we look back though, I can recall things from her being 1 years old and doing things that I realize now were probably seizures. Since we moved to Alaska though, they came back and seem to be here to stay. You feel sick before some of your seizures?? Sometimes we have to put Aley in a warm tubby because her tummy will tingle or hurt before some of hers. But, not always does she go into one. She has walked outside 2 times and we have waken up in the middle of the night to her walking in circles in the livingroom. She did it every night for a week....... we didn't know what she was doing and talked to her Dr and he said she was in a daze like state after or during a seizure. I don't even know if that is common...is it?? Well, hope tegretol helps her.....I am afraid of her being on any meds in the 1st place and we are getting used to her having to take this one. Change would be hard for us right now. Take care and let me know how you are doing. I'll keep everyone posted as well.
Love, Sandra & Derek
Love, Sandra & Derek
robinrobin
10-25-2003, 03:08 AM
yes, being dazed, confused, word stumbling, being extremly tired those r all things epilepsy brings to us. some people do have stomich aches. i am holding my 5 year old daughter right now, typing w/ one hand, it would just hurt so much as a parent watching your child go thru this. there are better times ahead for u, we all hope tegretal works for her ((((((((((((())))))))))
My Aley
10-26-2003, 02:22 PM
RobinRobin,
It's so weird....people think of seizures and epilepsy as only convultions. It's much more than that. Most of my daughters seizures are not violent but, staring spells and tremors. Not matter what, it is really hard to watch them go thru this and there is nothing you can do. How are your little ones? Aley has more energy today than she did at first. She does have some episodes of blanking out though, I don't know if it's because she's tired or if she's having small seizures. She normally would average 1 per month and some small ones but, she has had about a dozen small ones this week after starting the med. Is that something to be concerned about? Or is it normal? Since she is tired all the time, I wonder if that's what is causing them. Let me know if this makes any sense to you.....I am still learning. I ordered a packet from the Epilepsy Foundation, can't wait to get that. I also make a daily diary for Aley in a binder....so we track her med/dose/actions/seizures/food and we will share it with her Dr and new Dr when they move us. So, you are from Canada?? You're closer to me than anyone!! We are in Alaska for now.......hope to get back to ND though, who knows. I pray everything is going well for you and your children. Take care.
Love, Sandra & Derek
It's so weird....people think of seizures and epilepsy as only convultions. It's much more than that. Most of my daughters seizures are not violent but, staring spells and tremors. Not matter what, it is really hard to watch them go thru this and there is nothing you can do. How are your little ones? Aley has more energy today than she did at first. She does have some episodes of blanking out though, I don't know if it's because she's tired or if she's having small seizures. She normally would average 1 per month and some small ones but, she has had about a dozen small ones this week after starting the med. Is that something to be concerned about? Or is it normal? Since she is tired all the time, I wonder if that's what is causing them. Let me know if this makes any sense to you.....I am still learning. I ordered a packet from the Epilepsy Foundation, can't wait to get that. I also make a daily diary for Aley in a binder....so we track her med/dose/actions/seizures/food and we will share it with her Dr and new Dr when they move us. So, you are from Canada?? You're closer to me than anyone!! We are in Alaska for now.......hope to get back to ND though, who knows. I pray everything is going well for you and your children. Take care.
Love, Sandra & Derek
Branch
10-28-2003, 04:36 PM
HI Guys,
I used to get really crazy seizures. Some were mild were I would stare and just shake and some were bad to were i would fall on the floor and have to be taken care of. I think I have posted about this before, but I got the VNS device implanted a couple of years ago and it has done wonders for me. Just wanted to let you guys know. You should definitely check the info at www.cyberonics.com. (http://www.cyberonics.com.) Ever since I had my VNS put in, my seizures are under control and I am no longer embarrassed to do things.
I used to get really crazy seizures. Some were mild were I would stare and just shake and some were bad to were i would fall on the floor and have to be taken care of. I think I have posted about this before, but I got the VNS device implanted a couple of years ago and it has done wonders for me. Just wanted to let you guys know. You should definitely check the info at www.cyberonics.com. (http://www.cyberonics.com.) Ever since I had my VNS put in, my seizures are under control and I am no longer embarrassed to do things.
radasjewel
10-30-2003, 10:36 AM
Hi Sandra & Derek,
What you are describing with your daughter sounds like the exact same thing I put my mother through when I was younger. I have temporal lobe, simple & complex partials, grand-mals and photosensitive. So in answer to your question it is quite common to have different types of siezures at once. I used to do a lot of wandering off as well. I was really bad and there were many a times I decided to step out into the middle of a main highway flowing with traffic. I think that must have been how I gave my mother all those premature grey hairs....lol. Serious though, I was pretty bad at that and mum had a harness on me when we went out just incase I decided to go "walkies". Another one of my favorite "hobbies" was to pull and yank at my cloths. I often miss things as well like something someone says or being very forgetful. You spoke about your daughter going in circles, I have done that as well as a kid and also weaving of the head and rocking. Dropping things, falling, poor balance, slow reflexes, speach problems and learning dificulties are all effects from Epilepsy. I have been through all of this. You will find that peoples attitude towards it will be very "interesting". You will probably have to try and educate people on how the situation is and not what they percieve. This is a huge hurdle that both you and your daughter will have to face. I face it constantly still. Some ways that you can help her though are a few simple things like making sure her medicine is taken at the exact same times everyday with out fail and also have a strict sleeping pattern established. Believe me this really does help. It is great that you keep a diary of what is going on. This will let you see when she is most at risk and is also very handy to take to the specialist when you have to visit because they will be able to see what is happening and recomend what to do.
Please if you have any questions I will be happy to try and answer them. Most people here will be happy to help.
Take care hope things going well
Lori
What you are describing with your daughter sounds like the exact same thing I put my mother through when I was younger. I have temporal lobe, simple & complex partials, grand-mals and photosensitive. So in answer to your question it is quite common to have different types of siezures at once. I used to do a lot of wandering off as well. I was really bad and there were many a times I decided to step out into the middle of a main highway flowing with traffic. I think that must have been how I gave my mother all those premature grey hairs....lol. Serious though, I was pretty bad at that and mum had a harness on me when we went out just incase I decided to go "walkies". Another one of my favorite "hobbies" was to pull and yank at my cloths. I often miss things as well like something someone says or being very forgetful. You spoke about your daughter going in circles, I have done that as well as a kid and also weaving of the head and rocking. Dropping things, falling, poor balance, slow reflexes, speach problems and learning dificulties are all effects from Epilepsy. I have been through all of this. You will find that peoples attitude towards it will be very "interesting". You will probably have to try and educate people on how the situation is and not what they percieve. This is a huge hurdle that both you and your daughter will have to face. I face it constantly still. Some ways that you can help her though are a few simple things like making sure her medicine is taken at the exact same times everyday with out fail and also have a strict sleeping pattern established. Believe me this really does help. It is great that you keep a diary of what is going on. This will let you see when she is most at risk and is also very handy to take to the specialist when you have to visit because they will be able to see what is happening and recomend what to do.
Please if you have any questions I will be happy to try and answer them. Most people here will be happy to help.
Take care hope things going well
Lori
My Aley
10-30-2003, 11:39 PM
Branch and Lori,
Hey, thanks for the info. I actually looked up info on that VNS(??) thing. We want to see what her med does before we take another step. But, I am happy to hear that it works! Lori, sounds like my daughter almost to a tee. Aley walked out of the house twice...once I woke up hearing her crying outside the door....mind you we live in Alaska, thank God it wasn't winter. And, the other, I didn't know about until morning when I saw my daughter passed out on the floor in the living room and the front door was wide open........ It wasn't until later when I tried to start my car that I realized she had gone to the car, gotten in, turned on a light and left it on. She didn't wake up until after 2pm. I knew she had another one. The first week we brought her sister home we would get up to go to the bathroom and Aley would be walking in circles at 4 am in the livingroom. It was driving me crazy!!! I took her to the Dr, wondering what was wrong with her.....I thought she had only slept like 5 hours that whole week!!! Now, we put everything together and realize what was happening to her. Poor baby! She would also wake up terribly sweaty and pale, complaining of numbness in her feet and upset tummy. I would put her in the tub....not always would she get the tremor but, when she did, it made her embarressed. What type of epilepsy do you have?? Since you also have many different types of seizures....so does Aley. She has Simple Partial Epilepsy. Well, thanks for the info and don't worry, I will be asking questions!! lol Take Care!
Love, Sandra & Derek
Hey, thanks for the info. I actually looked up info on that VNS(??) thing. We want to see what her med does before we take another step. But, I am happy to hear that it works! Lori, sounds like my daughter almost to a tee. Aley walked out of the house twice...once I woke up hearing her crying outside the door....mind you we live in Alaska, thank God it wasn't winter. And, the other, I didn't know about until morning when I saw my daughter passed out on the floor in the living room and the front door was wide open........ It wasn't until later when I tried to start my car that I realized she had gone to the car, gotten in, turned on a light and left it on. She didn't wake up until after 2pm. I knew she had another one. The first week we brought her sister home we would get up to go to the bathroom and Aley would be walking in circles at 4 am in the livingroom. It was driving me crazy!!! I took her to the Dr, wondering what was wrong with her.....I thought she had only slept like 5 hours that whole week!!! Now, we put everything together and realize what was happening to her. Poor baby! She would also wake up terribly sweaty and pale, complaining of numbness in her feet and upset tummy. I would put her in the tub....not always would she get the tremor but, when she did, it made her embarressed. What type of epilepsy do you have?? Since you also have many different types of seizures....so does Aley. She has Simple Partial Epilepsy. Well, thanks for the info and don't worry, I will be asking questions!! lol Take Care!
Love, Sandra & Derek