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Neurologist in Boston area that's open to tapering off meds and ancillary therapies?

Thu, 09/19/2019 - 13:43
I just found out my son (in his mid-20s) has - on his own - tapered off and stopped his meds without medical supervision. I understand the frustration that led him to this - his current neurologist won't discuss anything other than drugs and more drugs. His first doctor talked about being open to this kind of experiment after a few years on meds, but she kicked him out of her practice a few years ago because her specialty was children with multiple disabilities, not healthy young athletes. His seizures started after a minor car accident when he was 18 - he'd never had them before but he had a rough 18 months of break-through seizures and ended up on huge doses of Kepra and Depakote. It's not inconceivable that whatever caused the initial seizures has righted itself and this is a good idea, but not without medical supervision. Does anyone know of any helpful doctors? (Or desk jobs because he has got to stop driving)

Comments

Hi BostonMom, Thanks so much

Submitted by Anonymous on Fri, 2019-09-20 - 10:00
Hi BostonMom, Thanks so much for posting and we understand your frustrations and concerns.Treatment varies for each individual, so it’s important that your son consults with his healthcare team (that you all feel comfortable with),  to determine what’s best for him and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms.Taking seizure medications regularly, and as recommended by the doctor is vitally important. Noncompliance with seizure medications can have significant consequences.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/importance-taking-medication If you all feel you cannot can’t talk openly with his healthcare team about stopping medication: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medication or you feel that you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, or assistance finding an epileptologist (epilepsy specialist) near you, please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  To get connected with employment resources, contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, [email protected]/helpline  Additionally, in many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupportExplore the employment section of our website, to help manage the impact of epilepsy on work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowOn Wednesday, 09/25/19, Getting Hired hosting an online live, text-based chat career fair, where users can connect directly with employers to talk about career opportunities. Learn more about the fair here: https://www.epilepsy.com/event/online-career-expo-getting-hiredFor additional information and resources regarding employment & transportation, please visit: https://www.ssa.gov/work/https://askjan.org/https://www.epilepsy.com/living-epilepsy/driving-and-transportation/transportation  It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is 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.pdf.The Wellness-institute: epilepsy.com/wellness  ,provides tools & 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

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