Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Overwhelmed by son's recent diagnosis

Wed, 02/05/2020 - 11:37
Our 9 year old son was diagnosed in November with partial complex Epilepsy. He started having seizures in Sept/Oct, but they were mild at first and we didn't catch on until late Oct. He responded to his first medication for about 5-6 weeks (at least while awake). He did start to say he was having episodes, but we had not have a chance to verify they were happening until earlier this month. I saw one occur and contacted our Neuro. He upped the medication and in the next 3 weeks he had at least 6 while awake. We saw the Neuro on Monday and he upped the dose again. I bought a camera and installed it in his room, so we can verify if they occur while sleeping. Since the dose increase he's has 2 while sleeping and 1 while awake. There is still more room to go until he hits the max dose for this medicine. I'm overwhelmed with how long do we keep letting the episodes continue before upping again, or just flat out switch. What resources are there for alternative therapies and methodology. I'm having trouble finding credible sources, books, etc. We asked about environmental factors we should look at to help reduce the seizures happening, but the doctor acted like it was a none issue. How many medicines will they try before they diagnosis intractable? He is a super smart, super well behaved kid and it hurts so much to watch him suffer, lose confidence, and worry so much at 9 years old. I want to advocate for him with the doctor, but I also have no idea where to even start this journey.

Comments

It sounds like your on the

Submitted by birdman on Wed, 2020-02-05 - 21:04
It sounds like your on the right track and very knowledgeable.  Keep track of the seizures and the medications.  I'm sorry to say that, at least from my experience, getting diagnosed as having "intractable" epilepsy is a long and tough process.  As a patient I wanted to be hopeful that the next drug or the increased dose would work.  But at the same time I often wished I could get an alternative treatment, which as we know, required getting sticker-ed intractable.  Try asking doc to refer your son to an epilepsy specialist.  Your Neurologist probably will want to keep trying more meds with the strict purpose of getting seizures under control, but I've found the specialist is more focused and organized on trying meds with one of two goals in mind: seizure control, or what my doctors once called "drug failure" to determine if patients is qualified for alternative treatment.    I made the switch from general neurologist to epilepsy specialist at about age 25.  I tried many new medications since and went through some uncomfortable periods, but it was encouraging to realize it was all for the purpose of getting answers rather than just rolling the dice to see if the next one worked.Mike

Hi, Thank you for posting and

Submitted by Anonymous on Thu, 2020-02-06 - 09:38
Hi, Thank you for posting and we understand your concerns. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyTreatment and how the body may react to certain medications varies for each individual.To learn more about medications he’s taking and things to look for: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt’s important that you all are following-up with your son’s healthcare team to continue to express your concerns and frustrations regarding his medication and seizure control. It’s also important to address any changes in seizure types, frequency, side effects, symptoms, moods and behaviors to determine what individual treatment plan is best for him. You all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary ,is a great tool for tracking & identifying seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers,and therapies, that may affect seizures and wellness, which can be shared with his doctors.It can be challenging to find a healthcare team that you're comfortable working with. If you feel you cannot talk openly with your doctors or that you aren’t working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions As Michael mentioned in his comment you all may want to consider having your son see an  epileptologist (epilepsy specialist), for assistance find an epileptologist near you, please visit: www.epilepsy.com/living-epilepsy/find-epilepsy-specialistIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt may helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.