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LGS and daughter resisting Epidiolex
Sun, 05/19/2019 - 21:05Topic: Medication Issues
My daughter currently takes Depakene, Banzel and Felbatol for her seizures. We have been reducing the Felbatol as it is the one med that makes her very fidgety. We finally have Epidiolex and if we get really good control of seizures we can finally back off on some of her meds. Issue is she dislikes the taste so much, I can barely get her to take it. She’s 17 and will go as far away from me as she can because she dislikes the taste or texture. She’s non-verbal as well. If anyone has had this issue and can offer any suggestions I would appreciate it so much!!
Hi, Thank you for posting.
Submitted by Anonymous on Mon, 2019-05-20 - 10:22
Hi, Thank you for posting. Please reach out to your daughter's healthcare team to further discuss this issue and any potential changes in side effects, behaviors,symptoms, or seizure types. For additional information about Epidiolex please visit, https://www.epilepsy.com/medications/cannabidiol-oral-solution &https://www.epilepsy.com/article/2018/1/parents-perspective-lgs-epidiolex-studyAs 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. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-teens-epilepsyThe 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. It may be helpful to connect with other people who live with epilepsy, or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other, by finding your local Epilepsy Foundation at epilepsy.com/localsupport , www.epilepsy.com/affiliates . 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 & additional support.