Community Forum Archive

New to the world of epilepsy

Tue, 04/14/2020 - 14:06
Hi everyone. My 9 year old was diagnosed with epilepsy last summer and it has been a horrible roller coaster ride. Everytime the meds stabilize my child the dr ups the dosage then it starts all over again. Her episodes range from staring out to nothing, intense rage, behavior problems, sometimes involving convulsing and now a new one is extreme horrific hallucinations. Drs have no idea where we are from on what is causing this. How do yall handle these as a parent? My husband and I are so worn out. So exhausted. So angry. So hurt esp when our child doesnt want to follow directions then throws themself into a seizure. We are so afraid we will lose our child one of these days from a intense episode. Any advice? Thanks everyone for listening.

Comments

I'm not a parent, but I am a

Submitted by birdman on Tue, 2020-04-14 - 21:22
I'm not a parent, but I am a patient who went through many roller coaster rides over the years with medication ups and downs, emotional problems (including anger and aggression that put me through several school systems), and many doctors.  Some of the general neurologists I saw as a child listened, but they only had medication to fight the seizures.  They seemed determined to find something that would bring a fix to the seizures no matter what mood problems I had.  Not only was it as if behavior control was not their concern or specialty, they treated my parents and me like we were silly to make such an association.  I'm assuming your daughter sees a general neurologist and not an epilepsy specialist.   It wasn't until I met with my first epilepsy specialist (back in 1990) that we got some confirmation that mood problems and epilepsy are often related.  Maybe medical science was just beginning to gather scientific data about it, but I think there was more.  I think that general neurologists who are stuck with medication as their only weapon must play with the pills and speak as if they are sure in the therapy.  Ask your doctor to have your daughter referred to a specialist; they can offer other options in treatment.  And as your daughter goes through her medication changes, seizures, mood changes, and doctor visits it is valuable to keep track of all that happens.  Doctors use this information to decide what further treatment a patient deserves.  Early in treatment it may be possible to keep it all in your head, but eventually the changes can be difficult and confusing to track.   The Epilepsy Foundation offers My Seizure Diary for this, or you can use a spreadsheet, or there is seizuretracker.com.  There is hope; alternative treatments do exist to help to control seizures and the mood problems that can come with epilepsy.  I'm not sure how many of these are available to people under 18.  Also there is hope that changes in metabolism sometimes bring improvement.  Mike

What tablets as it doesn't

Submitted by Paulf_5a363f10272a7 on Wed, 2020-04-15 - 06:01
What tablets as it doesn't sound like they are doing the what is required. As said before there is alternative options. 

Hi,Thank you for posting and

Submitted by Anonymous on Wed, 2020-04-15 - 08:31
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-epilepsy .Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects,that are very bothersome or cause other health problems.To learn more about the medications your daughter is taking and things to look for, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects . You all may want to consider keeping a journal or a diary to help keep track of her seizures, medications, and more by using a diary or a journal. My Seizure Diary, can be used to organize her health issues,record medication side effects, develop seizure response plans, and more, which can be share with her healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s important that you’re continuing to express your concerns regarding your daughter’s seizure frequency and behavioral issues with her healthcare team, who can help determine what individual treatment plan is best for her. Be open and honest about how you all are feeling, and how this is affecting his health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . Many clinics & offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask her doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you can utilize, or if they can make any additional recommendations for her. As Michael mentioned in his comment, you all may want to consider seeing an epileptologist (epilepsy specialist), to receive more specialized care for her epilepsy at a comprehensive epilepsy center, for further evaluation. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center. It’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.pdfEvery parent is different in how they cope with their child's epilepsy. It is important to find someone you trust to talk about your concerns and worries. https://www.epilepsy.com/learn/managing-your-epilepsy/managing-your-child%E2%80%99s-epilepsy . 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, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

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