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Parent of a Adult Child with Petite Mal Epilepsy
Wed, 09/25/2019 - 13:53Topic: Share Your Story
My daughter just turned 21 and was diagnosed with petite mal (absence seizures) when she was about 2 years old. Shes been on Depakote sprinkles since about her diagnosis at 2. Shes been with a special needs group here in California called Alta California Regional Center that got her Medi-Cal but now that she's 21, they're trying to terminate the Medi-Cal because shes 21 and not in a care facility or group home situation and we're at the start of a fight to help her keep the Medi-Cal because her medication is out of our price range at several hundred dollars per prescription. Basically we are being forced with letting her stay at home and have to pay for her Depakote out of pocket or make her move into a facility for special needs adults just to keep her insurance and medication for free.
Hi lkrause74, Thanks so much
Submitted by Anonymous on Thu, 2019-09-26 - 10:06
Hi lkrause74, Thanks so much for posting. We understand this can be a very frustrating and expensive process and we do have resources available to help. For more information regarding our patient assistance programs & national & community resources, please visit: https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistance https://www.epilepsy.com/living-epilepsy/247-helpline/national-community-resourcesFor information regarding insurance appeals, visit: www.patientadvocate.orgYou may also 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 Additionally, your local Epilepsy Foundation: epilepsy.com/localsupport can help you find resources, support groups, events, and programs in your community. It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents The Wellness Institute: epilepsy.com/wellness ,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