Hi. My name is Sandra, husband is Derek. We just found out yesterday after 2 years of hell that our daughter has epilepsy. She started taking tegretol today and we are watching her every move. She seems sleepy, more than normal. I guess as long as she doesn't have any more...right. She is 4, will be 5 in December. I have so many questions!! We have no support. My husband is in the USAF and we are stationed in Alaska. They are moving us though, since they don't have the physicians nor the medical facilities here to help her. We have flown to Washington and Anchorage for her to see Neurologists and finally we got some answers. Do many of you have more than one type of seizer?? My daughter has Focal and Partial Focal seizers along with(I can't remember the name)seizers that look like tremors. She will be totally awake during these, just that one side with one side will shake(leg and arm). She won't be tired but, we have noticed when they increase is before she has a larger seizer. She had "drop down" like seizers 2 and a half years ago but, her Dr at the time didn't think anything of them. I couldn't wake her up and she would wet or vomit or BM or all afterwards or during. Right now she has ones that look like a temper tantrum....she'll be on the floor kicking and moaning, turning her head from side to side. Afterwards, she will have no memory of it or about an hour prior and sleep for 16-18 hours. Others, she stares off and becomes tired, she won't always sleep though. And, then the convusion(sp?) ones....my husband and I think of these as the worst ones only because they look terrible. She will vomit after and become irritable(sp?). They usually happen at night, is that also common? We love her so much and want to help her as much as we can. At least we finally have something to call it and we can look info up on internet but, it's not the same as talking to people who are going through it. Any info you all have would be so helpful!! And, info on her medication would be nice too. Try not to scare us though...okay. Thank you for your time! Love and Blessings.
Sandra & Derek
YOu have come to the right place. There are several of us on here that don't have "E" ourselves, but our children do. I KNOW exactly how you feel. We went for 3 years before we knew what was wrong with our daughter. "E" was not even brought up until I actually SAW her eyes roll back when she was 4.
Does your child have any developmental delays? My daughter had trouble with speech, and we have been doing speech therapy. Now she is in school, she is 7 now, and we are noticing some definate learning disabilities. I think they are seizure related. She loses her short term memory, so unless it is drilled into her head and into her long term memory she loses it. If we teach her 1+1 today, and she has a seizure tonight...poof, all that work is gone. It has been tough.
Believe me, I have been where you are. It must be hard to be in Alaska with all this going on. My sis lived there for 4 years, and her daughter needed some neurological attention. She had to see an adult neuro until they could get out of there. But that is better than nothing!
My daughter started on Neurontin, but it isn't a common one to start with and she didn't last long on it. We are now on Tegretol and she seems to be doing fine with it. You will notice that over the years, with growing spurts especially...that you think you have the seizures under control, only to have them start again from the body changes. That has been my biggest frustration! So we go back, get a blood test, and most times she has to start taking more of her meds. But all in all, we are dealing with it, living with it and doing fine! She plays soccer, swims, chases the boys (ugh) and has a great time in school!
Take care and I hope this helps a little!!
welcome to the "E" group!!
Lindy, thank you so much for replying! It does really help. You asked about developmental delays in my daughter.......she was always ahead at everything as a baby. She sat on her own at 4 months old, said her first word at almost 5 months...she was very bright and smart/quick whitted. But, around 18 months, she seemed to decline a bit. I taught her to count in 5 languages...she was like a sponge...but, now......she has a hard time with short term memory and her speech has gone down. They say she doesn't need theropy though but, she slurs a bit. Poeple come up to me saying she's a little smartie and she talks so good. She says a lot of big words but, she doesn't pronounce things correctly for her age. After a seizer she won't be able to speak very well, not all of them but, some. We have taught her numerous times to spell and write her name....to do the alphabet but, she forgets everything! It does get very frustrating at times. She remembers her address..that's about it. But, she can tell you things about 2+ years ago and even what people were wearing. She'll say things like"when I was 3, you were wearing a yellow and blue shirt and we went to the park and played games". Songs she hears on the radio, she will recall what movie she heard that song in.....and she is right! But, these other things, she can't get!!! My husband is more patient than I am at repeating over and over again....it just want to cry. Does your daughter do the same? I had to call the Dr on call tonight because my daughter was having some effects that concerned me. She's sleepy and dizzy....that is mentioned in the instructions but, she started to halucenate(sp?), batting her hands in front of her face. She thought there were bugs in her face. It concerned me a lot because we were in public and what if she was in school?? She is only 4, will be 5 in Dec. not in school yet but, you know. How is your daughter on tegretol? Did it take her a while to adjust to the med? She has to see her Dr tomorrow before we can give her the morning dose. Does anyone else have this in your family? We have no idea where this came from, no one that we know in our family has had this or anykind of seizer for that matter. And, the Dr's don't really give you too much info...they expect you to deal with and research it yourself. Which is why I am so happy I found this site. Thank you for the welcome Lindy, we really appreciate it! Please feel free to email me with any info you have and to let me know how your little one is doing. Take care!
Sandra & Derek
Sandra and Derek:i understand completely what u are saying.....my daughter also has focal seizures..and the tremor seizures...with her focal seizures it causes her to drewl alot....my daughter currently takes valporic acid and tegretol...but nothing so far is helping the focal seizures..my daughter is also 4yr old and she was diagnosed with "E"2yrs ago.....i hope everything goes well with your child......take care cause we all care and understand.....
Hi,
I am so sorry for the pain you have been through. Now that you know what is going on it should make things a little better.
My seizures begin as focal (twitching hand), which go to partial (entire right side), then sometimes end in grand mals (unconscious and whole-body convulsing.) I have a pretty good warning period, so I can get myself to a safe place when I know a seizure is on the way. I am 49 years old, and began having seizures two years ago. I have a lesion on my brain that my Doctor has recently discovered is the result of a blood clot. I take Carbatrol and Lamictal. I absolutely hate having "E", but I keep reminding myself that there are much worse things I could be suffering from.
This is a wonderful place to come and get support, find information and share your hopes and fears. Most of us have "been there", either as spouses, parents, friends or family of "E" patients, or because we have the disease. I hope you will find the answers and support you seek. Meanwhile, please know that you now have lots of positive thoughts being sent your way by a huge group of caring people that frequent this board. Be well, Kathy
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When Mamma ain't happy ain't noone happy!
Child with seizers 
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