5 Year Old Girl - New Onset Epilepsy

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Wow, what a few weeks. Our story started the day after Christmas (12.26.14). My precious 5 year old girl had a seizure while with my mother that day. We rushed her to the ER only to be discharged with "hope this was a one time thing." Not so much, the next morning (12.27.14) another seizure (complex partial approx 1 min in duration). Back to the ER. Testing, overnight EEG, recurrent seizure diagnosis, several types of seizures. Welcome to the wonderful world of Epilepsy folks...

The Nero we saw in the hospital was as confused as us. How could so many seizures just "pop" up so suddenly. No history, bad health, seizures in the past, nothing. Normal healthy 5 year old girl (just tuned 5 in October).

The condition - Our daughter usually has 1 complex partial lasting roughly 1 minute per day PLUS several (20ish on bad day but more like 12 on average) of what we think are absence seizures throughout the day. Absence (we think) she pauses for a few seconds, sometimes has a "be, be, be" noise from her mouth and then snaps back to reality usually 3-5 seconds after. SOMETIMES, these migrate into the complex partials. But not always, usually only once per day do they migrate to what we call her "big ones" which again last about 1 minute.

We started her on 5MG of Lamictal 2X day (12.28.14) on her way up to 25MG 2X day. When we went back to the Nuero two weeks after the hospital visit(s), they decided to put her on Keppra (1.9.15) 1.5ml once a day up to twice after one week, to get immediate control of the seizures (hopefully) until we get up to full strength of Lamictal (takes time at 5MG increases every two weeks) :-(.

Now in lies the dilemma. After our initial dose of Keppra, we thought we saw immediate improvement. I mean for the next 3 days I nor my wife saw and absence seizures or complex partials (1.10.15 - 1.12.15). We thought, wow, this could be the drug that works! Our enthusiasm was destroyed when on 1.13.15 in the afternoon we began to see some absence seizures and then BAM on 1.14.15 she had 3 complex partials in one day. The most so far and the worst day for her yet.

It's 1.15.15 today and we saw one complex in the morning with a few absence before. Gave her the 1st dose of Keppra in the morning (1.5ml/150mg) and will another 1.5ml in evening. Hoping for a better day.

I guess my question(s) are:

>Has anyone had this type of sudden onset with so many seizures/types?
>How did you control the seizures if they are similar to my daughters? I know each patient is different but just curious.
>Any experience with Keppra having an effect after 1st doses but then not working a few days later? Maybe it was just a random period of no activity that wasn't related to the drugs? Seems too coincidental though.

This all just happened so fast and my wife and I are really scratching our heads. I know that's probably the story of most, at least what I have seen on message boards, just crazy when it happens. Especially with no warning! Thoughts and suggestions are welcomed!

Patrick
 

masterjen

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Hi, and welcome to the forums! You will find lots of great people here to offer opinions and support.
My first thought in reading your post is that Keppra and Lamictal are to my knowledge not general chosen to treat absence seizures, but it could be that at this stage your child's doctors are wanting to work on the other seizure types first.
Are you seeing a pediatric epileptologist? An epileptologist is generally preferred over a general neurologist, as they specialize in epilepsy, and one who is in pediatrics is that much better.
In my opinion you are right to get the seizures under control as soon as you can, as over time there seems to a trend that seizures trigger more seizures.
 
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I also think it would be unlikely that she is having both absence seizures as well as complex partials--those are two different kinds of epilepsy. Absence seizures are found with Juvenile Myoclonic Epilepsy and Generalized Idiopathic Epilepsy, etc., and those forms don't have complex partials, unless the person also has focal epilepsy. It's possible but unlikely. What you are calling absences are probably simple partials or possibly another manifestation of a complex partial, especially since she is making repeated noises during them. Focal seizures can come in a perplexing array of forms. As far as the sudden onset--I know I didn't have seizures myself until I was 12, and then I started having complex partials--a couple a day, every day. Not as many as her for sure, but I went from zero to daily. I don't have an explanation for you, and hope that you find one for your daughter soon as I know this must be scary for you. But there are a lot of meds out there, and even if these are the right meds for her, they take a while to stabilize on a dose and find the right dose, to see if the med is really going to be effective. I wish the best for your family.
 

masterjen

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Lindsayschu brings up a good point - that maybe what look like absences are not absences at all; I hadn't considered that. I think absence seizures frequently show up fairly clearly as such on an EEG, and at your child's next appointment you may be able to find out if this was (or was not) the case.
I can say from experience it is a long and frustrating road titrating up to the desired dose with Lamictal! Good luck with everything and hang in there.
 

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Thanks for the replies! I'm really glad I found this board!

I wondered if what we thought were absence were really partials. They just seemed so much like absence based in everything I have read. Short duration, acute onset and termination, no disorientation afterwards... The one thing that did throw me was the vocal repetitions. Perhaps they are partials.

I'll keep you all posted on how the titration up on Lamictal works. And the Keppra...
 

psless

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I did forget to mention that her initial overnight eeg showed partials, generalized both absence and non absence seizures. 3 types in probably a 20 hour period.
 

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How can you tell if meds are starting to work but your not at the right dose? I ask because my daughters seizures seem to be much less frequent but she still has one in the morning when waking up. Is it normal for the seizures to get less frequent but not go away entirely until you get to the right dose?
 

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psless

You notice the medication working when the seizures get less as for the right dose for you you that is something you and the neurologist need to work out, its not easy to find the right dose. You can get full control with medication but then you might not, some of us do not get full control with medication but we always hope. Ask your daughter a few simple questions, like how does she feel or something, you will know the questions to ask your daughter.

Always hope for full control with medication, but remember its HOPE, you never know.
 

masterjen

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Seizures becoming less frequent is often a good indicator that the medication is helping. As Fedup points out, asking your daughter how she is feeling can give you an indicator if she is better after a seizure now than she was previously. Another indicator that medications are helping is seizures becoming less severe, shorter or less involved, as is the case for me.
 

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So my daughter has been on Keppra 1.5ml (100mg/ml) 2x day and is still working her way up to 25MG 2x a day on Lamictal. Currently at 10MG 2x day on that with the next bump this weekend.

She has been doing noticably better during the day BUT she still has a complex partial 1st thing in the morning after waking up. They always seem to happen within 15-30 minutes or so after waking up. The rest of the day has been relatively good with no noticable seizures. We think (HOPE AND PRAY) this is a sustaiblable improvement as she was having several small 5 second seizures (6-12 noticable) and 1 60 second seizure a day before.

Has anyone seen this where someone will still have 1 in the morning? I wonder if we will see a difference when she bumps up a little on Lamicatal this weekend. Thoughts?
 

masterjen

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Hi, I'm glad things have been improving! As for the seizure in the morning, having seizures when waking up (and for others, when falling asleep) is relatively common. It is related to the brain itself (and therefore the type of brain waves that occur in sleep states versus awake states) transitioning between the sleep and awake states. For some interesting reading, google 'stages of sleep and seizures'.
These seizures may decrease as lamictal is increased, particularly as you have been seeing improvements so far.
 
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Hello! I am relatively new so can't offer a lot of information but I wanted to welcome you. I found wonderful support and oodles of information here to help me. I hope you do to.

Also, sleep transitions are my most active seizure times even when I am otherwise seizure free.
 

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Thanks giveasmile! This has been one heck of a road. We are still learning, hoping, and praying to get my daughter's epilepsy under control.

So even when you are seizure free otherwise you still have them during the sleep transitions? Do the sleep transition seizures every go away too?
 

masterjen

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She could eventually obtain complete control of these transition seizures as the lamital dose continues to increase, or they may continue to be a "weak time" for her, particularly if she has had inadequate sleep or is under physical or emotional stress.
 

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Well on day #5 without a long complex partial. I think this is a record! Increased Lamictal to 15MG 2X day yesterday on the way up to 25MG 2X day. Still on 1.5ML of Keppra 2X day.

She still has a couple to a few small, probably 1 second now, blips in the morning. A few right around the time she wakes up. I noticed a couple yesterday evening too. She has been sick and not getting good rest because of congestion which I think has something to do with them. The fact that they are much shorter (used to be 3-5 seconds) is promising and they are much less frequent as well. She was having them all day before on most days.

Today has been a good day. She went to preschool and played with her friends for a couple of hours. I think she needed that as she has been couped up in the house for a while as she has been adjusting to the meds.

Boy, we really have seen some mood swings with the Keppra. Good days and bad but they come in waves where she will all of a sudden get SUPER cranky. Not that she didn't have temper fits before but they are much different and come on so suddenly. I see what everyone has been talking about now.

All in all thankful for each minute of seizure freeness. Hopefully we see more improvement and can actually have a completely seizure free day as we titrate up. What a ride...
 

masterjen

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I am so glad to hear that overall things are improving. As you say, when she has recovered from her illness and her sleep is better, you may noticed fewer "breakthrough" seizures. Lamictal is known as a mood stabilizer, so as the dose increases you may find her mood swings due to the keppra lessen. Wishing you continued good luck!
 

Nakamova

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She still has a couple to a few small, probably 1 second now, blips in the morning. A few right around the time she wakes up. I noticed a couple yesterday evening too. She has been sick and not getting good rest because of congestion which I think has something to do with them. The fact that they are much shorter (used to be 3-5 seconds) is promising and they are much less frequent as well. She was having them all day before on most days.
Possibly unrelated, but nasal congestion is a mild side effect associated with Lamictal.

I hope she continues to do better on the med combo.
 
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Thanks giveasmile! This has been one heck of a road. We are still learning, hoping, and praying to get my daughter's epilepsy under control.

So even when you are seizure free otherwise you still have them during the sleep transitions? Do the sleep transition seizures every go away too?
Yes, it's just my most prone time but there is more I can try.

Many people have gotten full control with medications and do not have transition issues.

I am really happy to hear that there has been improvement!
 
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I've also noticed for myself, that even when I achieve the targeted dose of a med, I might still be having some seizures--but a couple of weeks out, they stop. Just speaking from my own experience, that the longer I'm on a stable dose of a med without making dose changes, the more I stabilize. I've particularly noticed this with Keppra--I have rarely responded to dose changes right away--the true benefit has been realized a week or two out. I'm so glad to hear things are improving and she is responding!!
 
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