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PurpleAngel

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My 7 year old daughter has epilepsy. She was Dx in November 2004, while she was in Head Start. I do now believe that she was having them already in 2003, but we didn't know.

It all started one night when we were eating supper. She asked me to pass her the corn, and in the time it took for me to grab the bowl she was 'spaced out' I said her name a couple times and she took the food. I thought nothing of it... Then I noticed she was rolling her eyes A LOT, but I do that in response to people so I thought okay, she has my take on life in general. The next week her teacher called with her concerns. She said that she was noticing the episodes about 40 times in the 2 hours that she was there. I made an appointment with her Ped. From there we went to see an adult neurologist, who pushed drug upon drug onto her. I now had a 4 year old who slept 19 hours a day!! I would call and my concerns were dismissed like I was stupid. This went on for 14 months.

In March of 2006, we were able to connect with a Ped. Neuro. She did a complete med wash, and started us all over again. Right now she takes Depakote, and we are trying to get her on Zarontin and off the Depakote, but she can't swallow things yet.
 
Welcome PA -
How very sad to lose that time with your daughter. I do hope your new doctor can help you get her back again. Are you seeing improvement with the one med?

My daughter was 14 when she had her first seizure. Though hers tend to be the TC variety, and mostly during the day when she is at school. I benefit from dietary choices. Not that easy with a teen, but we have replaced quite a few foods and I see good results. Recently I am on an MSG and related additives search. I personally want her off of the drugs. That is my goal.

There is some great info here. I hope you find some of it interesting.
Glad you could join us.
 
Hi PA, welcome to the forum. :hello:

My wife used to have multiple absence seizures every day too. She hasn't had any in over a decade now though since she finished 5-6 months of EEG neurofeedback. I'd recommend looking into it. Kids respond to it faster than adults.
 
It's tough for me to say that the med is working since most of her seizures aren't that noticable, and with her being in school from 7-3:30. The teacher claims not to see anything, but then again she is busy with the other 12 kids and doesn't have the time to focus on one child.

She was in patient a few months ago to get a continous EEG on her, since with the 2 hour ones she refuses to cooperate, and will not sleep either. According to that she is having constant misfirings that are very likely and capable of becoming full seizures (?) something like that. I remember as much as possible, because appts don't go well. She refuses to let the Dr. examine her, and I have my 5 year there too.

I would like to ask if there is a way to get an EEG on her while she is living a normal day... The inpatient one gave some answers, but to me you would get a better idea of what is going on when she is living her normal day, instead of sitting in a lumpy bed, and allowed only to go to the bathroom when needed. Does that sound dumb??

I am not educated very well on the issues, because I don't like talking to the Dr at the appts since she will not cooperate, the Dr gets upset, and I don't want to talk about Kay like she is an invalid.
 
PurpleAngel said:
She was in patient a few months ago to get a continous EEG on her, since with the 2 hour ones she refuses to cooperate, and will not sleep either. According to that she is having constant misfirings that are very likely and capable of becoming full seizures (?) something like that.
Click to expand...

This is fairly common. Partial seizures (like absences) can sometimes generalize (spread across the brain) into bigger seizures.

PurpleAngel said:
I would like to ask if there is a way to get an EEG on her while she is living a normal day...
Click to expand...

It's called an ambulatory EEG.
 
If you can find the time... you need to educate yourself.
The teacher can't possibly keep track of something so clearly individual. Perhaps a district nurse could spend time in the room and observe at different times of the day.

I have the feeling that your daughter is picking up on the fact that you are uncomfortable around the doctor and perhaps that is why she does not want to be examined. Can you find a doctor that you trust and can talk to? This is so important. We had our own battles with this, so I know. Also if you have any friends that you can leave your younger child with for the hour or two that you will be at the doctors, I highly recommend that. It is important that you are able to say what you need to say and ask questions and really hear the answers. Take notes, and share your findings. There is enough on your mind, not to be distracted by a younger child.

That is my 2 cents worth.
 
The neuro that she has right now is one of two that are from the Children's Hospital, which is an hour a way from me, and since I can't drive my options are quite limited. I do like this one 100 percent more than the first one. She does take more time and will explain things if I ask.

K's being uncomfortable stems from what has happened to her in the last 15 months. She was abused (I think from age 3 on, but can't prove it) and went through a lot of questioning and exams that would make any 7 year old uncomfortable, so that I think is the reason she shuts down like that. She hasn't ever been able to open up about the abuse, and I really think that is weighing her down so to speak.

I have done some searching on the internet to educate myself, but don't know where to go. Most of the stuff I have found is medically worded and doesn't make sense. I found a site that describe actions during seizures that would help classify them, but she does things from both so all that did was confuse me further. I am going to call her Dr. and ask that at her appt in January, if I can leave the kids in the play area, and talk with her prior to her seeing K.
 
It is all rather confusing I agree.
There are some great references that are easier to understand than some. Many are posted around this forum. Take a stroll through some of the threads. Also if you put in a word or two in to a Google search you will see some great results as well. Seeing the same subjects/descriptions pop up over and over again is a good indication you are on the right track.

I agree the actions are hard to pin down at times. But I would suggest that you go with your motherly instincts and know that a label doesn't change the fact that she needs you right now.
The emotional trauma you suggest might have occurred ia reason enough to cuddle up to her and let her know that you are going to figure it out, no matter what it takes.

Sorry I was confused about the doctor. I am glad that you like the current doctor. It is so important to have that trust. Especially with what you are experiencing. What a huge burden to carry, for both of you. I think your idea to leave the kids to play while you have a few moments with the doctor is a great idea. Do you have someone to take with you to help you keep them entertained?

Now is the time to reach out for support. Hard to do sometimes, but your little girl is worth it.
 
Thanks for being gentle with me.

I think my mom is going with us, since K's dad mayhave to work on that day. With his job you don't know if days off are approved until the day before most of the time and appt details need to be concrete before that. I need to convince Mom to drive the hour here, get us drive an hour to the Dr. and then the whole return trip. I am sure she'll do it, since her grandchildren are her world :)

I am calling tomorrow to see if I can also set up a ambulatory EEG, if the Dr. is comfortable doing that, and allowing her to at least be in school for a bit while doing it.
 
That is a whole new adventure to me, we only had the 24 hr VEEG and that wasn't even a a full 24 hrs. Please let us know how it is done if she says yes to the test.

Oh, and give Grandma a kiss from me for helping out. My mom is in her 80's so I haven't had that support. My sister has been great though.
 
I was just wanting to say howdy and welcome too, Im sorry to hear about your daughter having so many seizures. Hopefully you can find some answers soon, its very hard at times thats for sure. I think the last EEG I had was an ambulatory one but not sure they asked me to say awake for 24 hours before I went in. I had around 7 seizures spikes within a 45 minute period.

Hope you find some answers soon,

Brian
 
I will let you know. But they are at an out reach center today so I will have to wait until tomorrow or Monday to actually talk to her Dr. The on call one won't be of much help with an non emergency thing.

I will. I love my Mom. She has the patience of a saint, and loves ALL the grandkids to the gill.
 
Purple,

I will keep Kay in my thoughts and prayers,
and hope it will all work out. And they find
the answers quickly.

hugs.gif
 
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