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22 month old diagnosis help

Tue, 05/14/2019 - 22:42
My 22 month old had a tonic clinic seizure and was hospitalized for 2 days. He tested positive for the cold virus so neuro felt the seizure was a result of the virus. Being aware of what to look for as far as additional seizure activity we started to notice some staring spells. 48 hour EEG came back normal. I have a few questions: 1. Does this automatically rule out epilepsy? Or does this mean that he just did not have a seizure in the 48 hour period? 2. Should we get a second opinion? Would another doctor interprets the test differently? My doctor told me to gather videos and then make an appointment. There doesn’t seem to be a pattern to the spells and they are so brief this won’t be easy but I’m going to try. His mood is greatly affected when I notice more staring. And then he usually falls asleep before his typical nap or bedtime. And when he wakes he is much happier. I just want to see my happy boy all the time. My doctor said it could possibly be sensory related. Does anyone have experience with that? Thanks!

Comments

Hi Mjovan, Thanks so much for

Submitted by Anonymous on Wed, 2019-05-15 - 09:31
Hi Mjovan, Thanks so much for sharing your story. We cannot determine if your son has epilepsy, or not and recommend that you continue to follow up with his healthcare team. For additional information about seizures & diagnosing epilepsy please visit these links https://www.epilepsy.com/learn/about-epilepsy-basics/what-causes-epilepsy-and-seizureshttps://www.epilepsy.com/learn/diagnosing-epilepsyFor information regarding finding a specialist and second opinion please visit https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist , https://www.epilepsy.com/affiliates & https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionsAdditionally you all may want to consider with your son’s doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with his doctor. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000,contactus@efa.org  , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. 

Thank you for your reply. I

Submitted by Mjovan on Wed, 2019-05-15 - 14:25
Thank you for your reply. I was truly just curious if anyone out there had experience with a normal EEG with observation of seizure activity still. This is a very new area for me and I’m sorry if my questions are a bit naive. I think a part of me is still recovering from the trauma of my son’s very long grand mal seizure. I am going to another pediatric neurologist for a second opinion and hopefully I will be able to capture some episodes on video. Is there a support that I am able to use that I would be able to submit videos for clinical advice? Also, as far as an EEG goes, do different doctor’s interpret the brainwaves differently or is it a pretty straightforward read? Again, sorry for questions that might be stupid. I’m a bit in over my head here.  

Hi, Thanks for your reply. It

Submitted by Anonymous on Thu, 2019-05-16 - 15:05
Hi, Thanks for your reply. It’s very understandable that you’re feeling overwhelmed, so please don’t hesitate to ask questions! We can only offer education,support & referrals, so it’s good that you’re following-up and getting a second opinion.  Here is some good information on EEG readings https://www.epilepsy.com/learn/diagnosis/eeg, https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg & https://www.epilepsy.com/learn/diagnosis/eeg/how-read-eegAs a caretaker, https://www.epilepsy.com/living-epilepsy/parents-and-caregivers it’s important to make sure you’re taking care of yourself as well. The Wellness Institute, https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress

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