Community Forum Archive

Jeavons syndrome - Urgent Advice Needed

Thu, 01/16/2020 - 13:12
Dear All, I hope you can help with some advice. My daughter who is 19 has had arm jolts for many years which are clearly triggered by tiredness. These were checked by 3 day hospital monitoring before she undertook a 6 month world trip. She was given the all clear and we were told this was Jeavons syndrome which might even disappear over time. She is now far from home (luckily with her sister) and had a seizure on the beach. It lasted 5 mins and she awoke from it unaided. She was rushed to hospital and is stable. They recommend visiting a neurologist and or local neurologist (who I spoke to today) suggested she now needs tablets. My question is would you recommend that she immediately comes home which will really upset her or do you think it is realistically possible for her to be treated abroad within a fairly limited time (let's say two weeks) ?

Comments

I forgot to write that this

Submitted by Big Jim_5e20a41d09192 on Thu, 2020-01-16 - 13:39
I forgot to write that this was her first ever seizure and she'd only slept 3 hours. In the last months the jolts were happening perhaps only once a month. As parents we're torn because we'd love her to come home but we can understand that she would like if at all possible to complete the trip which she has planned and saved for for so long. 

Hi, Thank you for posting and

Submitted by Anonymous on Fri, 2020-01-17 - 09:54
Hi, Thank you for posting and we understand your concerns and know that you all want to do what’s in your daughter’s best interest. We cannot determine if it’s best for your daughter to come home or not. You all may want to consider discussing this with her local healthcare team at home for additional advice and continuing to speak with the neurologist she's seen while she’s on her trip, to help determine what individual treatment plan is best for her. Talk with your daughter open and honestly about your concerns and how your feeling. Review our section on adapting plans for travel together, to help tailor travel plans, teach others how to respond to her seizures safely and appropriately, prevent seizure emergencies, and staying safe during her travels: https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel It’s important that your daughter is able to recognize that lack of sleep is a trigger for her, and that she gets adequate rest and sleep, especially while traveling. https://www.epilepsy.com/learn/triggers-seizuresKeeping a journal or diary, like My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary is a great tool for identifying & tracking triggers and seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. Creating and having a seizure response or action plan can be helpful to organize information about your daughter and her seizures in one place, so she can have it with her at all times. Seizure Response Plans can be updated easily to include the latest information about her seizure management, here : https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/using-seizure-plans-and-other-resources  This may be particularly helpful for her to have while traveling away from home, so those around you daughter can help respond appropriately, if she were to have another seizure.  It’s common for those who are in caregiver role to feel overwhelmed, but it is just as important to make sure they are taking care of yourselves as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  Additionally, 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 questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline

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