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Nervous about this wean
Tue, 07/23/2019 - 20:41Topic: Medication Issues
Hello epilepsy community, so here is my story in a nutshell. My son was diagnosed with epilepsy at 18 months old he was on 4 medications to stop the seizures and on the ketogenic diet. The diet worked and the dr started weaning down meds. We are starting the last wean of Keppra tomorrow. He is on 150 mg twice a day. Coming down to 1/2 a pill in the a.m. full dose in p.m. for one week then; 1/2 a pill in a.m. and 1/2 pill in the p.m. for a week then call the dr after that. I guess I am just scared because the other meds we weaned he had a crutch with another med behind him. He will be seizure free for 2 yrs coming March 5th 2020. It seems like a long time but from where he was till now it is a major improvement. Does anyone have any experience with weaning Keppra. I think I just need to hear that he will be okay.
Thanks for reading and good luck to everyone here. One day we will all beat epilepsy!
Comments
Thank you for your advice!
Submitted by Nael.mom on Thu, 2019-07-25 - 19:17
Thank you for your advice!
Hi Nael.mom, Thanks so much
Submitted by Anonymous on Wed, 2019-07-24 - 08:34
Hi Nael.mom, Thanks so much for posting and we are so happy to hear that your son has been seizure free for almost 2 years, that's fantastic news!https://www.epilepsy.com/aimforzero/strive-stop-seizuresWe understand your concerns and it’s important that you all continue to communicate this to your son’s healthcare team, as well as any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . Additionally, there are plenty of things you all can do to reduce these feelings and help to manage his epilepsy, by visiting: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your son to understand what do if he has a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his seizures, record his medical history, medications, side effects, moods,triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor more information regarding Keppra, tapering off medication and the keto diet, visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medicationhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diethttps://www.epilepsy.com/learn/seizure-and-epilepsy-news/keto-news As a caretaker, it’s just as important to make sure you’re taking care of yourself as well and to remember that you are not alone. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. 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. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools For additional questions, please contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline Or contact your local Epilepsy Foundation: epilepsy.com/localsupport