DaizyGrace - newly diagnosed daughter

[beyonder422]

My soon to be 11yr old daughter was recently diagnosed with E: Complex partial with secondary generalization

We started noticing "things" about a year ago but couldn't tell what was happening until she had her first grand mal at school a few weeks ago.

She took her first dose of Keppra (500mg) - 2023.01.27@9pm.

Within 30mins she was ready to goto bed, about normal time for her, and she mentioned her stomach was hurting a little.

We'll be watching her like a hawk for the next few weeks, sleeping with us - we have no idea what to expect from the meds.

Are just as scared of the med as E.

Any feedback on tween daughter use with Keppra - greatly appreciated.

 

[Sabbo]

Hello & welcome to CWE! This is a great place for info.

I have both simple & complex partial seizures--I tried Keppra when it first came out, but was allergic to it--it caused such severe cramps that I was doubled over in pain. My simple partials were also diagnosed after I suddenly had a few grand mals as a teenager (I haven't had any of those since). The complex partials began about 23 years ago.
Medications & med combos are very tricky--what works for one person may not for another, or they could even be allergic to it, as I am to many of the AEDs. I have taken EVERYTHING out there for the types of seizures I get. I'm now on 500MG Zonisamide & 200MG Xcopri per day, but I still get breakthroughs once in a while.
It will help if you keep a log of the seizures: include the time they happen, what happens during them, & how long they last. That will help the neurologist. I have notebook in which I've been logging my seizures.

 

[Nakamova]

Hi beyonder, welcome to CWE!

I can imagine what you're going through -- seeing a loved one (especially a child) have seizures can be tough. Big hugs to you. I don't know if it helps, but with grand mals (a.k.a. “secondary generalization”), there's no pain in the event itself, and no real memory of it either.

Keppra is one of the first meds prescribed for seizures because it's easy to get up to a loading dose very quickly. It works perfectly for many folks, for others not so much. One thing to keep an eye out for is moodiness -- known as “Kepprage”. If your daughter experiences this side effect, ask her doc about taking a B6 supplement -- sometimes that can help with this side effect.

And if Keppra ends up being problematic, there are a lot of other seizure meds out there. Don't be afraid to ask her neuro for information.
Also probably helpful to make sure her classmates and teachers are reassured and educated about epilepsy so they know what to do and how to react, and so that your daughter doesn't feel shame or stigma (hopefully she hasn't yet and won't ever!). I sometimes tell folks that epilepsy is like asthma or diabetes -- it’s not a contagious disease, just a chronic disorder, and it’s important to take meds and be take care of your general health.

I hope all goes well with you and your family. Feel free to ask for more anecdotal advice here -- and support!

Best,
Nakamova

 

[XxBlaqkxX]

Sorry to hear =(

I first was diagnosed with a seizure disorder when I was about 9-10 years old. They put me on Dilantin/Lamictal first when I had epilepsy when I was 14. When I was 19 and took Keppra, that was the only thing that had fully worked for me. I didn't have seizures for 10-11 years while on it. What happens after those years was something else, but it was what helped me.

I can't say I'm a fan of the side effects people get from it, but I haven't had many problems with it. Although, I do worry about vitamin deficiencies, which I seem to have an awful lot of.

I remember when I first took it, I felt like I wanted to do nothing else but sleep the entire first week of taking it. I felt so lethargic.

Even now, I take Keppra and it helps the majority of the time, but I'm struggling a bit these days with other issues in life that have brought about more stress on my body. The fatigue I have is unmatched to anything I've ever felt before. I suspect I'm having some thyroid issues or a hormone imbalance of some kind as I am tired all the time and can't make it through the day without a couple naps.

 

[beyonder422]

Thanks for the feedback...

She started taking 500mg, twice a day, 4 days ago.

So far, no major reactions or issues.

She initially seemed fine, but day after day, slowly seemed slightly more hyper, as well as more easily aggravated.

It appears she is feeling the extremes of her emotions, but not too bad, she's able to stay fairly normal.

I've been told it will take a full 7-10 days for her system to get fully acclimated, so here's hoping it stays where it is.

Thanks for your insight.

 

[Porkette]

Hi beyonder,

Welcome to CWE! I was 10 yrs. old when I started having absence seizures then 2 yrs. later I started having complex
partial seizures also and that was 50 yrs. ago. I tried keppra a few yrs. ago and it didn't help me at all it gave a hot
temper and my seizures increased so I had to go off the drug.
I was on many different drugs over the yrs. then my Epileptologist which is a Dr. that specialized in epilepsy did a DNA
test on me and found out I am drug resistant to all seizure meds out on the market so he told me to start using the medical
marijuana and to my surprise that has lowered my seizures to the lowest in my life.
As it was mentioned get a calendar and keep track of your daughter's seizures write down what time they happen and also
take note if she is sick or if there's low pressure in the weather. Sometimes a low pressure in the weather can affect some people
because the air gets heavier and that in turn affects the hormones which can trigger seizures. When I was a young girl every month
I would have seizures about 5 days before my monthly cycle and that's all do to hormones changing. What helped me as crazy as
it may sound was eating nut because the peanuts have progesterone oil in them and that helps calm the nerves.
I got the most help at an Epilepsy Center which are usually at large hospitals or university hospitals. Then I started seeing a team
of Drs. an Epileptologist along with a neuropsychologist and neurosurgeon and I had surgery to help reduce my seizures from 300 a yr.
to 41 seizures this past yr.
If you daughter using a cell phone a lot take note if she has a seizure after using one. I was in a medical study and they found that
some people are cell phone sensitive which means if they are around a lot of people using cell phones at the same time or if that
person is using a cell phone it may trigger a seizure for them. I never realized this until my Dr. did a e.e.g. on me and purposely fired
up his cell phone. Then he saw each time he fired up his phone the spikes on the e.e.g. went sky high.
You may want to also put your Dr. on vitamin B12 once day that helps calm the nerves and keep her away from diet soda or anything
with nutra sweet in it because that causes more electrical activity in the brain and can trigger seizures.I found that out the hard way
after drinking diet soda. Also you may want to look into the ketogenic diet. It's been around since 1927 and it's a diet that is high in
fats but low in carbs and starch foods and this diet builds up keytones in a persons body and the keytones stop the seizures. I have
a cousin who had grand mal seizures during WWII and he was on the diet and flying planes during the war and he didn't have a single
seizure until he came home and went off the diet.

I wish you and your family only the best and May God Bless All of You,

Sue

 

[valeriedl]

It usually takes a little bit of time of figure out what medicine and dosage that is needed to work best. And yes it will take at least a week for the meds to kick in. If she's having side effects from the medicine that she can't handle let her neuro know.

I have had epilepsy for 20 years, I was 27 when I had my first seizure. I've gone through a few different changes with things through the years.

I hope things go good with your daughter.

 

[Sabbo]

I recall complaining of having "weird feelings" in my head sometimes even when I was 5, but nobody could understand what they were. It wasn't until I had 3 or 4 grand mals when I was 14 (none since) that they were recognized as simple partial seizures (one happened during an EEG). The simple partials aren't an issue for me--I can feel them on, & they usually last less than 5 minutes.
Approximately 24 years ago, the complex partials (that I know of) began. Those have been VERY troublesome for me. They occur without any aura. Many have put me in very dangerous positions, for example, causing me to burn myself severely or even nearly fall onto the tracks at the commuter train station. I am totally unaware of their occurrence without witnesses unless I do something to myself or my surroundings.
I'm on 500MG/day Zonisamide & 200MG/day Xcopri (which I began last year after taking Topiramate for over 15 years). I was averaging 1-3 breakthrough complex partials/month--now, I'm probalbly having about 1/month.