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Trileptal side effects

Sun, 03/15/2020 - 09:09
My 4 year old had a tonic focal seizure in Jan and was put on Trileptal and was taking it for a month and had a seizure. Doctor increased the meds and he started to experience side effects. His legs get wobbly and can’t hold balance. Doctor then reduced the meds and said for some it takes longer to adjust to meds. At this point I think Trileptal is not for him. What has been your experience with Trileptal

Comments

Hello. It sounds like you

Submitted by Patriotrehab on Sun, 2020-03-15 - 22:08
Hello. It sounds like you have been through a lot in the last few months with your son being recently diagnosed with epilepsy. These are difficult, but common experiences with people who are newly diagnosed. Someone from the Epilepsy Foundation will probably be responding to you during the week with some more information, but here is a link with some information on Trileptal. https://www.epilepsy.com/medications/oxcarbazepine I’ve personally taken Trileptal, but before I share my experience with it...I’ll tell you some general things about AEDs that I’ve learned in my 20 years since being diagnosed with epilepsy. As a general rule, I’ve experienced more side effects from AEDs if the medication was given to me at a higher dose to begin with or titrated too quickly, which is what the doctor is suggesting may be happening with your son. My body takes longer to get used to medication than others. However, there are some medications that other people experience side effects that I never have  any, so please keep that in mind too that each medication is different from person to person. My experience with Trileptal was that I tolerated it very well for a number of years until they increased my dosage past 900mg per day and then I had severe vision changes that were intolerable and it still wasn’t controlling my seizures even in combination with another medication, so it was discontinued. I had several seizures for days upon discontinuing it though, which indicates that it was effective in controlling some of my seizures. Your son is very young though and children tolerate medication differently. If you don’t see improvement with the side effects with the medication adjustment that was made within a few days and then ultimately seizure control, it’s important that you continue to discuss your concerns with the doctor. If the doctor doesn’t seem responsive to your concerns, then it is appropriate to seek a second opinion so that you may find a doctor who you have a good working relationship. 

Hi,Thank you for posting. As

Submitted by Anonymous on Mon, 2020-03-16 - 09:31
Hi,Thank you for posting. As Gianna shared with her experience taking AED's, 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.Prior to making any changes to his treatment plan it’s important you’re continuing to follow-up with his healthcare team, who can help to determine what individual treatment plan is best for him and if he continues to experience any changes in side effects, symptoms, seizure types/ frequency and behaviors. It may be helpful to keep a journal or a diary to help track his seizures & side effects. My Seizure Diary can be used to organize his health issues, manage medications, record side effects, track seizures, develop seizure response plans, and more which can be shared with members of his healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary  . 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 making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt 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 , find support groups, events, and programs in your community

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