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Infant with Epilepsy
Tue, 05/28/2019 - 10:27Topic: Parents & Caregivers
My son started having seizures in March at 7 months old. We went to the ER where they took blood and completed a CAT scan - both came back normal. Exactly one month later, he had another episode. We were taken to a pediatric hospital where they completed an EEG (45 mins) and drew more blood. At that point, the neurologist felt he was not having seizures, but seizure like activity. We were sent home. Within 15 mins of being home, he had another episode that took us back the peds hospital. He went through a 38 hour EEG, blood work and an MRI - again all came back normal. He was prescribed Keppra (.5 ML twice a day). Since then, he has had episodes almost weekly. Each time the neurologist increases the medication, but says he his confident that our little guy will outgrow his epilepsy. We have noticed a pattern in his seizures - every episode has been when he is teething and when he has his legs pulled in (as if trying to have a bowel movement). Our doctor has dismissed our concerns with this. We are desperate for answers for our son and are trying to find hope that he may outgrow this stage. Any experiences similar? Has anyone had a child outgrow this? We are currently waiting on the results of genetic testing and on our appointment to get a second opinion.
Hi ssinnett11, Thanks so much
Submitted by Anonymous on Tue, 2019-05-28 - 10:57
Hi ssinnett11, Thanks so much for posting. It’s important that you continue to express your concerns to your son’s healthcare team and discuss any changes in side effects, behaviors, symptoms, or seizure types. For additional information about seizures & diagnosing epilepsy please visit these links, https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy & https://www.epilepsy.com/learn/diagnosing-epilepsyFor help finding an epileptologist and information on second opinions, 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-opinions Additionally, 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 doctors. As a caretaker, https://www.epilepsy.com/living-epilepsy/parents-and-caregivers , it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfThe 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. For additional questions, please contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can assist in connecting you to resources, provide referrals & additional support.