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Awareness, concentration, tests and how/where to get help

Tue, 10/22/2019 - 02:39
Where to start, can't be the first to write that! Well, the current issues surround my daughter learning to drive and the hazard test, but are more general. Background. My daughter is 23, had her first seizure when 5 years old and has generalized epilepsy. She has been on drugs ever since and has been about 4 years seizure free. However, this makes her very tired and she finds it hard to concentrate. Although being of at least average intelligence, she has always struggled academically, especially with tests (ok with project or practical work though). She 'seems' to have some autistic traits (OCD, finds reading hard etc) and I read that there might be connections between the 2 conditions, however, her mom has always refused to consider this (stigma maybe). So no diagnosis, although various online tests have suggested she 'might' be on the spectrum, albeit low down. Recently, people have suggested she might have some sort of auditory processing issue. This seems to fit in with what I observe daily, slow to understand instructions, slow to respond and if given multiple things to do, stalls for time, rarely remembers more than 1 or 2 things asked etc. Back to now. She has applied for her driving learners permit, being free of seizures for several years, although this understandably fills us all with dread. She struggled with the theory test, even though she knows the subject, eventually just scraping through after 4 or 5 attempts. However, she is trying to pass the hazards test, where you have to react to perceived or possible dangers on screen. She has failed twice now and based on this and slow responses to unexpected situations we've come across on the road, I fear it's all connected. I'm very concerned. I might be connecting too many dots or making 2+2=5, but I can't help thinking there's some sort of connection with her neurological condition (epilepsy) including the drugs used to control this. Don't know where to even start or how/who to talk to even begin to explain what I'm wanting to happen or what that is. Hoping that (selfishly maybe) this is something familiar to someone else on here and there might be some helpful suggestions of what to do or where to go (feel free to tell me where to go especially after such a drawn out question!) Hope this is the right place and forum to post this, if not please let me know, as I've never reached out before. Thank you.

Comments

I’m a licensed clinical

Submitted by Patriotrehab on Tue, 2019-10-22 - 08:12
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. Given her extensive history, you may have already had this done at some point and if so, perhaps it’s just time to get it updated because it’s been a number of years. If not, it can definitely help answer some of your questions. Neuropsychological testing that includes processing speed should be done. I would recommend getting this done by a neuropsychologist at an epilepsy center because they are familiar with how specific types of epilepsy patterns affect particular attention, memory, processing speed, and motor control. They also screen for mood and anxiety disorders to see if that can be affecting attention or concentration. You may also be able to express your concerns that the medication causes some of these issues and that while there’s no diagnosis for the OCD or autism spectrum disorder you believe she has some tendencies and “why”. I recommend being specific rather than stating it’s because of an online test though. Some psychologists will also evaluate and diagnose the OCD and/or autism too, possibly beforehand but that won’t answer your questions about the neuropsychological issues like attention and processing speed. Someone from the epilepsy foundation may also respond to you over the next few days with more information. Hope that helps!

Hi coopercav,  Thanks so much

Submitted by Anonymous on Tue, 2019-10-22 - 16:49

Hi coopercav,  Thanks so much for posting and we are so happy to hear that your daughter has been seizure free for four years, that’s fantastic news! It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/programs/family-services has offered some great advice and resources in her comment. It is common for people with epilepsy to report having difficulties with thinking, memory & attention.  Learn more about challenges with Epilepsy here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd It’s also common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and 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 care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  and contact your local Epilepsy Foundation at:https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline

Hi coopercav,  Thanks so much for posting and we are so happy to hear that your daughter has been seizure free for four years, that’s fantastic news! It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/programs/family-services has offered some great advice and resources in her comment. It is common for people with epilepsy to report having difficulties with thinking, memory & attention.  Learn more about challenges with Epilepsy here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd It’s also common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and 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 care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  and contact your local Epilepsy Foundation at:https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline

Thanks heaps for you

Submitted by coopercav on Wed, 2019-10-23 - 00:02
Thanks heaps for you responses, time and advice. I will have a look at the links and read up on Neuropsychological testing.

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