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missellie

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Hello, have just joined as I could really do with some support and wisdom from others who are going through the same things.

My son who is 8 was diagnosed with focal seizures in July 2017 and it's been a rollercoaster few months. They're trying to get his medication right, he started on Lamotrgine but that hasn't worked so he's now on Keppra but that is horrendous so far. Not sure what drug will be next???!

He is also being assessed for autism (Aspergers) so life sure ain't dull lol. His school are supportive to a point but have called us in for a meeting next week due to his behaviour which I think is a result of the Keppra.

We as parents constantly feel on edge waiting for the next seizure and making plans for events is difficult which then affects our 11year old daughter.

Hoping 2018 will be better!!
 
Hello missellie, & welcome to CWE! This is definitely the right place to get info and support.
I've had epilepsy since childhood, but my seizures (Simple Partials) weren't diagnosed until I was 14--after I had some Tonic Clonics. About 17 years ago, I began to have Complex Partial seizures, as well.
Every person is different. Because of that, it usually takes a few tries to find the right anticonvulsant and dose. The side effects may often be the worst part of the medication.
Keppra is known for causing "kepprage" in many people--for me, it caused cramps so severe that I was doubled over. Lamictil/Lamotrigine caused a rash, so I couldn't use it either.
I, unfortunately, have tried just about EVERY AED out there, but still get 1-3 breakthrough complex partials/ month.
 
Hi misselllie, welcome to CWE!

Have your son's neurologists discussed any dietary treatments? Might be worth considering since there are less likely to be side effects along the lines of what your son is most likely experiencing with Keppra. (Is he taking a B6 supplement by any chance -- for some people that can lessen Keppra's mood-related side effects).

Below are a few CWE threads that might be of interest:
http://www.coping-with-epilepsy.com/index.php?p=modified-atkins-diet
http://www.coping-with-epilepsy.com/forums/f32/gluten-free-diet-no-seizures-8299/
http://www.coping-with-epilepsy.com/forums/f20/children-epilepsy-6196/
http://www.coping-with-epilepsy.com/forums/f42/autism-epilepsy-general-epilepsy-experiences-23950/
http://www.coping-with-epilepsy.com/forums/f42/alternative-treatments-non-verbal-kid-20704/


:hugs:
Nak
 
Aww thanks v much for the lovely welcome. Thanks for the links, will have a look at them once the kids are in bed.
 
Welcome Ellie!

When our child was first diagnosed (at 6 after six months of knowing there were some seizures, she’s now 11), it was only partials (later caught myoclonics and atypical absence which are generalized). Our first doc gave us a choice between two drugs and we opted to try trileptal first. It stopped most of the simple partials but didn’t seems to affect complex partials which were infrequent. Side effects were being tired for a few days after increasing the dose (for some people the tiredness doesn’t go away). It doesn’t usually impact cognition. You might want to look it up, trileptal / generic is called oxcarbazepine.

We’ve tried three drugs (when trying to swap out our second drug, so were on all three at one point) and it didn’t stop all the partials. We thought lamotrigine was bad but keppra was worse (starting to go down the suicidal ideation path) and now our child is only on lamotrigine as it controls the generalized seizures and most partials that trileptal and lamotrigine together stopped. Our child’s side effects from lamotrigine are mitigated by splitting the daily dose into three instead of two. If our child could take pills, the extended release would do the same.

I hope this medication issue gets sorted sooner. It really is a lot of figuring out on an individual level.
 
Hi missellie,

Welcome to the forum! Sometimes seizures can relate to autism and one thing I have found out to get the best med is to ask the Dr. to do a DNA test which is just drawing some blood and getting some salvia from the inside of a persons mouth, this is sent to the lab and they can see the amount of enzymes in a persons liver and their body chemistry and match that up to the best seizure med with the least side effect or if the person is drug resistant like I am.

Your child is at the age where hormones are changing and that can have a lot to do with the seizures and autism. I've had seizures for 45 yrs. and 2 brain surgeries and one thing that helped me is cutting back on the carbs and starch foods and eating foods high in fat this is called the ketogenic diet you may want to try your child on this diet. Also try cold water therapy which is just putting a cold washcloth on a persons face and neck 3 times a day at the same time and anytime a seizure is starting up this will calm the neurons down in the brain and in many cases stop the seizure, I was in a medical study and they found this worked for many people. I wish you the best of luck and May God Bless You & Your Family!

Sue
 
It's always worse for the parents. I worried more about my mother than I did me because of the stress my epilepsy caused. Don't trip too much. You'll try a bunch of drugs and hopefully one will work well.

Hang in there and welcome to CWE.
 
I'm so sorry for you. My Son is 15 and also has just been diagnosed with Generalized seizures. So we know how you are feeling.

Our life has stopped until we can get this under control.
 
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