New Diagnosis for my 6 year old son

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My 6 year old son was just diagnosed with epilepsy. He had a tonic clonic seizure 2.5 years ago. We never saw another seizure until about 2 months ago. He had 3 absence seizures over a two week period and now we haven't seen anything again for about 6 weeks. After the seizure in 2016, his MRI and EEG were both clear. This time, EEG was abnormal. (He has also always had bad sleep issues. We had a sleep study done a few weeks ago. There was no seizure activity but they did find that he has sleep apnea and what they thought was maybe restless legs. So that doctor did an iron test and his iron is low. Not sure if any of that is related.) Now, the doctor has prescribed him Keppra to control the seizures. I am so nervous to give him this medication. I have read some of the side effects and I'm scared to death to change him. He is such a sweet and happy little boy. I don't want him to become any more anxious than he already is or aggressive and moody. He is also incredibly smart and I worry about affecting his intellectual abilities and memory. His seizures are so rare. I obviously don't want him to have another tonic clonic seizure and risk something happening to him but I also don't want to disrupt his life and change his mental state when he's having so few seizures. Any advice that will give me peace of mind putting him on this? I am devastated having to medicate him but I know part of that is my denial that anything is wrong with him and wanting to pretend a problem doesn't exist since it is happening so infrequently.

Comments

There are always a range of

Submitted by Amy Jo on Thu, 2019-04-18 - 15:19

There are always a range of possible reactions but keppra isn't generally considered a problem for cognition, e.g. here's a link (must cut and paste because actual linkes aren't part of replies on this site) to a paper on cognitive impacts of epilepsy drugs https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229254/My impression after hanging around boards like these is that Keppra tends to either work great OR work great but cause significant issues with mood/anger (and for at least one type of epilepsy keppra makes seizures worse but that's not an issue for you). Most people don't see many side effects and some side effects are just for a short while after starting or increasing a dose. Many neurologists suggest people take B6 supplements with keppra. And while some parents saw initial issues, many noted the side effects subsided away after a few months so the adjustment time could be 6-8 weeks before you really have a good idea about how well it works. But it's a great drug from the perspective that it doesn't interact poorly with a lot of drugs (common for most epilepsy medications), it has an IV form, it's metabolized really well and very quickly so you might see improvement within a day of starting it, even at low initial doses. It's definitely worth trying. Know that I say this even though my child had a bad reaction (black box warning type of issue) and got off the drug after 8 weeks. Know that everyone is different, you can't know how your child will react without trying it out and giving it some time. It is super wonderful when seizures are controlled or reduced. Uncontrolled and continuing seizures can cause brain damage. Unmedicated/untreated seizures are associated with SUDEP (even has happened to little kids so push yourself past denial). Medications are generally a great approach. You've probably heard about diet (not easy to start, usually done for people with severe epilepsies). You've maybe heard about CBD - the only approved medication that's available is for very severe forms of epilepsy, docs are not going to prescribe is for just anyone and doing CBD on your own is problematic - it's still a drug with side effects and interaction issues along with issues for developing brains. And after trying keppra and should it not work, I promise that the next drug suggested will have scarier sounding side effects and it might still be an appropriate and helpful option for your child. The list of side effects should cause you to be serious about the decision, not discount it as an option.

Speaking as a parent who

Submitted by Amy_58d46477a2d24 on Fri, 2019-05-17 - 16:11

Speaking as a parent who hated to put my own son on Keppra, you have to do what you feel is right for your child. In my experience, my son had a prolonged tonic clonic seizure at school and every one since was long after that. At that point is when we realized we was probably having absence seizures for who knows long? We had to medicate to prevent the longer seizures. For you, absence seizures are not a huge deal, but can generalize based on your son's history. You never know when an absence will turn into something scarier. That's that's the hard part of being the parent of a child who epilepsy. You cannot predict anything. Keppra is a very harsh med, and if you feel there is a little denial, or it's not for him, maybe try step off it a little and see how he does. You can ask to try another med. My son has absence, tonic clonic & complex partial seizures and does well on Lamical. It has been the least amount of side effects. I know it's scary. I'm sorry we have to deal with this at all. The decision you make will be ok, so please do not feel guilty for whatever it is. You are an amazing parent!

Im in your same situation. My

Submitted by Alyaak on Sat, 2019-08-24 - 03:29

Im in your same situation. My 6 year old girl has absence seizures. Around 20 perhaps a day. I was advised to start her on Keppra. She’s a very happy sweet and joyful child and I dont want to lose her. Currently Im following my motherly intuition to give the diet and natropaths another 3 to 4 months of trial, before I have start Keppra. I have a feeling and hope she will not need the medicine. Im currently consulting online with nutritionforseizures website. Im hopeful. Let me know what happened with your child