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UGH!

Fri, 01/10/2020 - 07:05
Good morning! I am at my wits in so Im reaching out to others, thank technology! I noticed changes with my daughter when she was 7. Being in medical I pushed for a EKG. A year later and many hoops we finally go one. Neurologist hyperventilated Emily. Nothing. No seizures. Again I pushed. EKG showed absent seizures, my brother had Grand Mal. We began Zarotin pills 2 in am , 2 at night but shortly had to change to ethosuximide because she threw up for days with no releif. The liquid ethosuximide did great. Initial dose was 10mL in am and pm. Few months went by she was doing great so her neuroligist changed to name brand liquid. She wasnt on that long after I came home and found she cut herself. Back on ethosuximide. Few months went by neurolgist put her back on pills. Same issues. So once again we went back to ethosuximide with a increase to 12 mL twice a day because it was being ineffective. 6 months later we do a 24 hour EKG. Still showing seizures so we bump her med to 13 ML a day. Everything is great. Couple days ago the neurologist put her back on pill zaratin 3 twice a day. We are back to having gastro problems. Im so frustrated. Her neurologist has suggested Depakote but that has some serious side effects. Help me. Do I throw in the towel and find another neurologist? What are feelings about Depakote or Keppra? Thanks everyone.

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Fri, 2020-01-10 - 12:12
Hi, Thank you for posting and we understand your frustrations and concerns. 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 medications she takes, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsPrior to making in changes to her treatment plan it’s important you’re continuing to follow-up with her healthcare team, to determine what’s best for her and if she experiences any changes side effects, symptoms, seizure types/ frequency and behaviors. If you feel you cannot talk openly with her healthcare team, or 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-specialistYou all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences and therapies, that may affect seizures and wellness, which can be shared with her healthcare team. It’s common for those who are in caregiver role to feel overwhelmed, but it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  It can 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  Or 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 

buggyprincess,Are you pushing

Submitted by birdman on Fri, 2020-01-10 - 19:52
buggyprincess,Are you pushing doctor for an EKG or an EEG?

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