Mom with 4 y/o new onset absence seizures

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gracie

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Hello everyone,

I'm new here and am glad to have found this forum.

My 4 year old daughter started having absence seizures about 3 months ago...at least that's when I noticed the first one. I thought she was just being silly and didn't pay it much attention, but a couple of weeks ago I saw another one and it hit me what was going on. The diagnosis was confirmed yesterday when our pediatric neurologist induced a sz in his office and the EEG also confirmed. She started Zarontin today.

My husband and I are overwhelmed, as I am sure most are when they are in our place.

Any advice? We are like deer in headlights right now. So many emotions...guilt, confusion, fear, sadness...I could go on.

Thank you in advance.
 
Hi, gracie
Welcome to the forums. There are several people here on the forums with children, and some whose children have absence seizures as well.
I don't have kids but I do know from personal experience that it can be an overwhelming world going from normal to suddenly having seizures, to diagnosis then on the rocky road of trying to find the right medication.
Hang in there and good luck! Feel free to ask questions.
 
Hi gracie, welcome to CWE!

And hugs to you as well. I know it's very tough when an epilepsy diagnosis is new. It's normal to feel afraid and sad and confused, but please don't feel guilty. Epilepsy is a strange and complex disorder, and most people don't learn anything about it until they or someone they love develops seizures.

I hope the Zarontin helps your daughter. I advice you keep a seizure/symptom/medication diary so you can track how your daughter is feeling on the Zarontin and get a sense of how well it is working. If it's problematic, you might ask about trying something like the Modified Atkins Diet. It's shown success in treating childhood seizures especially absence seizures. You can find more about it here:

http://www.hopkinschildrens.org/Modified-Atkins-Diet-Treats-Childhood-Seizures.aspx
http://www.atkinsforseizures.com/

Best,
Nakamova
 
Thank you so much for your kind responses. I've seen her seizures decrease by about half after 2 days on Zarontin. She seems to be more tired at times, and more hyper other times.
We go up on her dose in 4 days, and are praying for complete control with minimal or no side effects.

Any advice on how to help her otherwise? We are trying to be patient when it seems like her fuse is shorter than normal with her siblings. Not sure if this is medicine related or just the normal ups and downs of being 4.

She intensely dislikes taking the medicine. We give her a sip of coke, meds, another sip of coke, then chase it with a lemon drop. Whatever works, right?

I appreciate all advice. Thank you again.
 
It's terrific that the Zarontin is helping right away. You might ask your daughter's neuro about the option of slowing down the ramp-up onto Zarontin. That might give her brain a little more time to adjust to the medication, and potentially minimize side effects. In general, transition phases on meds can be tricky, and it's good to wait a few weeks (if possible) in order to get a sense of how well a given med is working and what, if any, side effects it may be causing.

Moodiness isn't listed as a side effect of Zarontin, though that doesn't necessarily rule it out, and side effects can manifest differently in children than in adults. That said, even if your daughter is experiencing some of the common side effects (drowsiness, insomnia, headache) those could be contributing to her mood.
 
Thank you again for your response.

Have any of you noticed a change in seizures once started on medicine? My girl's seem different than before. It's kind of like the szs are "lighter", if that makes any sense. She doesn't seem as deep into them as she was at diagnosis, they are shorter (in general), and she is able to respond to me even during most szs. Thoughts?
 
I think one of the primary ways that Zarontin works is by disrupting the seizure process -- i.e. not necessarily preventing it altogether, but stopping or suppressing it after it starts. That could explain why your daughter's seizures seem less intense.
 
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