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Old 04-03-2005, 10:45 PM   #1
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emily2 HB User
new here

Hi, my 16 month old daughter has recently been diagnosed with epilepsy. She had her first seizure at 10 months old and has a total of 5, with her last one being induced by a high fever on Feb 8. All her fevers are @ 8:30 am and before breakfast. Her test results have all come back normal-EEG, MRI, CTscan, spinal tap, extensive blood work, and fasting-blood sugar. She is now on Trileptal for 1 year and then we'll take her off it and see what happens. I don't know how I will handle watching her go through another seizure. I can barely hold it together when she has them. I swear I have post traumatic stress disorder from her first seizure-we did not know she was having one-she just fell over and her eyes rolled up. When I picked her up she twitched once or twice, then went limp and turned blue for almost 5 minutes. We called 911 and I was screaming like a crazy woman because I thought she died. I have so many questions, but mostly I am looking for some kind of support group with other people who have experience with seizures. None of my friends or family understand and just blow me off. One of my friends who has a baby 2 months younger than mine acts as though my daughter is retarded and her daughter is a genius- always telling me how smart her baby is, and what new things she does, and how lucky she is that her baby is "normal". I just want to punch her and tell her that her baby better be smart because she certainly doesnt have looks going for her! Anyway, I hope to make many new friends here and am looking forward to talking! And thanks for letting me ramble and vent!
Emily

 
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Old 04-04-2005, 02:45 AM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: new here

Will the medication change (reduction; taper) be at Dr's recomendation?

Any adjustment of medication is dangerous if not on Dr's orders... So work with the Dr...

I missed that it was your intent to try it down the road in one year... but ASK THE DR if they think she may be able to come off the medications...

One year is very short for a person to be on medications... Usually a **few years** is considered short in the medical community.

Check where you live and see if there is a epilepsy support group or epilepsy group and one for parents... That may be of GREAT help for you. I can't imagine what my folks went through with me when I was 5 and mine first started. My first seizure alone was ONE HOUR! I'm sure that caused more than a few grey hairs on mom.

Education is always the key. Knowing what to do in case of a seizure. basicly teaching family, or giving them "lessons" verbal or printed material of that nature on your childs behalf of that nature. A lot of my relatives somewhat avoided me for the fact I had seizures, but never had one around them... just the fact I COULD have seizures.

I have a friend who knows what to do, andis VERY comfortable with it. Her MOTHER (nurse!) is uncomfortable with me helping when she was moving. Almost as if the parents were nervous with me being there due to my seizures. I didn't push or ask. My friend didn't even understand why I wasn't wanted and said my help could have been used.

When I worked music festivals I handed out first aid info to the heads and biggies at the fest that was first aid for seizures, contact info for me, my med infom dr info and contact etc... Not that it helped... When I had a minor seizure, with 3 seizure identifiers on me they thought it was heatstroke and poured COLD WATER on me (rolls eyes).

NOW I have a laminated card in my wallet for first aid for seizures, and my medications. Not the best place for it; but seeing how three identifiers that were ALL visable failed, I decided not to use those anymore. This way now alllows me to carry a days worth of meds on my person legally; and if I DO have a seizure and am hauled off they can find my meds and my Dr's card on the back side of them... (also helpfull at the airport when I travel).

Some people are hard to understand... I've seen a lot of different reactions. There are still people that think seizures are contagious sadly, or people who have epilepsy are as you posted of lesser intelligence. Just because people are different has no bearing on their ability to function in society or the ability to learn. The community needs to look past medical conditions and look at the person INSIDE.

--Travis

 
Old 04-04-2005, 08:19 AM   #3
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thinkimcrazy HB User
Wink Re: new here

I agree with Travis. I have found the same type of problems. I just started having seizures out of the blue 3 weeks ago. I have found it very hard to get any type of support. My family has been really great! (my immediate family - husband and kids). My mother is always telling me what I should not be doing, which is everything in her book. She freaks out when we go anywhere together scared that I am going to have another one. I've tried to explain to her what this is but it doesn't seem to set in.

I have not been diagnosed yet. My first EEG was abnormal just because I had to high beta waves(no big deal). I had to have the 24 hour EEG and it showed nothing. I had a seizure though and I don't really understand it all. My doctor reassured me that that didn't mean anything. (then why do you do the test). He wants me to go have the Video EEG done. I am on 400 mg of Dilantin. Now I'm only have a seizure once a week. They just increased my meds on Friday. The whole thing is very confusing to me. I would love any insight that I could get. I'm not sure what to do from here. I keep asking myself if I'm crazy and causing this myself. Although I don't know how I could. I want everything back to normal. I haven't been able to drive and it really sucks. I have managed to scare all four of my kids. My doctor said that my seizures are the tonic clonic type. I had to get musle relaxers for my shoulder and back. I'm so wiped out after I have one. It took me a week to shake of the one I had last week.

I hope that your child gets all this behind her. Often I think seizures are harder on our loved ones that ourselves. I know that I would be very upset to see my child go through that. My understanding though is that you have to go 2 years without a seizure before your doctor will take you off meds. Like I said I'm new to this to so I could be wrong.

I hope you find the help that you need.
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Old 04-04-2005, 08:21 AM   #4
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Re: new here

Hi, thanks so much for your reply and sharing your experience. It is the doctors idea to take her off Trileptal in a year. He said that the brain remembers how to seize and that it can do it just out of memory (so far it has always happened @ 8:30am, before breakfast, and when she is teething). So he said he wants to try to control the seizures with meds for 1 year then wean her off of them and see what happens. I don't know how much she takes- the bottle says 300mg/5m sus- and she takes 1/4 teaspoon twice a day.
After her first seizure, my sisiter said (while still in the ER) that she won't ever watch Miranda (my daughter) for fear she will have a seizure. My mom babysits her, and I'm sure she is tired of me always giving her instructions on what to do with Diastat.
I wish I knew what causes her seizures, but all I get from docotrs are a bunch of "I dont knows" to my questions.
We have an epilepsy center here, do you think I should take her there instead of a regular neurologist?

 
Old 04-04-2005, 09:26 AM   #5
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thinkimcrazy HB User
Re: new here

I wish I had the right answer. I got to regular neurologist and have not had the greatest experience with him. Maybe you should try to do that? It seems that seizures are so much of the unknown. I keep getting the same answer. Obviously your baby is not just making them up so there has to be a reason.
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Old 04-04-2005, 01:50 PM   #6
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Art_930 HB User
Re: new here

Hi, Emily - Welcome!

Loved the crack about the "genius" baby - I laughed out loud. Your sense of humour will get you through anything.

Thinking of you and your child and wishing you both the absolute best.

 
Old 04-04-2005, 05:24 PM   #7
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: new here

If you are covered and not totally satisfied with the current doc, YES. Epilepsy specality centers are the better places to go to. Thats why I said the first part, IF YOU ARE COVERED. They are not cheap for out of pocket paying. Even if it's for a consultation to compare what the other clinic is wishing to do and have a second opinion.

For very young children I don't know what to tell you; but it wouldn't hurt to call and ask if they could help. Depending on your satisfaction with where you are at; just call the specality clinic and ask if then can help a very young child (then specify the age to whom you are speaking with).

If the goal is to keep your child off medications that would be great. I have been chained to drugs since I was 5. I would like greatly to get off them.

--Travis

 
Old 01-27-2007, 06:25 AM   #8
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pjonyd HB User
Re: hppe that your baby is doing well now.

Quote:
Originally Posted by emily2 View Post
Hi, my 16 month old daughter has recently been diagnosed with epilepsy. She had her first seizure at 10 months old and has a total of 5, with her last one being induced by a high fever on Feb 8. All her fevers are @ 8:30 am and before breakfast. Her test results have all come back normal-EEG, MRI, CTscan, spinal tap, extensive blood work, and fasting-blood sugar. She is now on Trileptal for 1 year and then we'll take her off it and see what happens. I don't know how I will handle watching her go through another seizure. I can barely hold it together when she has them. I swear I have post traumatic stress disorder from her first seizure-we did not know she was having one-she just fell over and her eyes rolled up. When I picked her up she twitched once or twice, then went limp and turned blue for almost 5 minutes. We called 911 and I was screaming like a crazy woman because I thought she died. I have so many questions, but mostly I am looking for some kind of support group with other people who have experience with seizures. None of my friends or family understand and just blow me off. One of my friends who has a baby 2 months younger than mine acts as though my daughter is retarded and her daughter is a genius- always telling me how smart her baby is, and what new things she does, and how lucky she is that her baby is "normal". I just want to punch her and tell her that her baby better be smart because she certainly doesnt have looks going for her! Anyway, I hope to make many new friends here and am looking forward to talking! And thanks for letting me ramble and vent!
Emily

 
Old 01-27-2007, 06:34 AM   #9
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pjonyd HB User
Re: hppe that your baby is doing well

I was reading about trileptal and I read about your experience with your baby. Well all I want to say is hopefuly at this point everything is back to normal. The experience that you went through was exactly what we went through.
Jonathan started taking trileptal in january 2004 he was 5 years old at that moment,now he is 9 ,after all this years with the medication,the doctor decided to take him out of it,so we start lowering the dose,by february 19 2007 he will be completely out of the medication and we are so happy,we were waiting for this day to come if seams like eternity.
I wissh you and your family a healthy and blessed life

 
Old 02-06-2007, 02:23 PM   #10
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squimmy HB User
Re: new here

Hi I Ahve Epilepsy And My Parents Went Through The Same As Me I Developed It At Age Two And I Still Suffer Serverly With I Now Myself Have A Child And She Is Also 16 Months And She Was Born With A Servere Heart Condition And I Detected Epipepsy Off Her So I Brought Her To Hospital And She Got An Eeg And It Came Out Normal But They Detected Something But I Still Dont Know Still Waiting If You Need Any Information Just Ask
Your Not Alone!!!!!!!

 
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