Plymicrogyria 5years old boy

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Hello, My son in law (5yo) as a type of polymicrogyria resulting in epilepsy, developmental delay, intellectual disability and somewhat motor dysfunction. He is being followed by several doctors, but the treatment has been mainly reducing the seizures rather than finding ways to improve the cognitive and motor impairments. He is being medicated with Levothyroxine and Carbamazepine. I wanted to know if there is any site/forum where I could share results from EEG/MRI/TAC/cognitive tests... and try to discuss and get some additional ideas suggestions. Thank you very much in advance, Tiago Rodrigues

Comments

Hi,Thank you for sharing your

Submitted by Anonymous on Mon, 2019-12-09 - 09:31

Hi,Thank you for sharing your story. We are not able to interpret your son in laws test results. We can offer education, support and referral information. It would be best for you to reach out to his healthcare team for further explanation of his test results and to determine what individual treatment is best for him. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with his healthcare team or aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a 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-specialist Having a partnership between educators, family members, peers and his health care providers is important, so that a plan for academic success as well as a plan for safety, management of emotional or behavioral dysregulation and active social integration can be developed and evaluated on an ongoing basis. https://www.epilepsy.com/article/2014/3/epilepsy-impact-life-childYou may want to consider having your son in law see a neuropsychologist, (an expert in assessing brain function) to adequately determine their individual strengths and weaknesses and make recommendations about schooling. Psychologists can also measure a child's adaptive level, or ability to manage common daily activities. Obtaining an accurate picture of a child's potential requires an assessment by professionals from different fields. By integrating the different observations and test results,these professionals can reach a depth of understanding that could not be provided by one person. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/when-its-more-just-seizuresTo learn more about the role of neuropsychologist, psychologist and social workers play in the treatment of epilepsy, visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-teamIt may be helpful to keep 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, setting reminders, recording medical history & other therapies, moods, behaviors, and triggers, that may affect seizures and wellness, which can be shared with his healthcare team. 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, or contactus@efa.org. epilepsy.com/helpline

Hi,Thank you for sharing your story. We are not able to interpret your son in laws test results. We can offer education, support and referral information. It would be best for you to reach out to his healthcare team for further explanation of his test results and to determine what individual treatment is best for him. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with his healthcare team or aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a 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-specialist Having a partnership between educators, family members, peers and his health care providers is important, so that a plan for academic success as well as a plan for safety, management of emotional or behavioral dysregulation and active social integration can be developed and evaluated on an ongoing basis. https://www.epilepsy.com/article/2014/3/epilepsy-impact-life-childYou may want to consider having your son in law see a neuropsychologist, (an expert in assessing brain function) to adequately determine their individual strengths and weaknesses and make recommendations about schooling. Psychologists can also measure a child's adaptive level, or ability to manage common daily activities. Obtaining an accurate picture of a child's potential requires an assessment by professionals from different fields. By integrating the different observations and test results,these professionals can reach a depth of understanding that could not be provided by one person. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/when-its-more-just-seizuresTo learn more about the role of neuropsychologist, psychologist and social workers play in the treatment of epilepsy, visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-teamIt may be helpful to keep 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, setting reminders, recording medical history & other therapies, moods, behaviors, and triggers, that may affect seizures and wellness, which can be shared with his healthcare team. 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, or contactus@efa.org. epilepsy.com/helpline 

Hi,Thank you for sharing your story. We are not able to interpret your son in laws test results. We can offer education, support and referral information. It would be best for you to reach out to his healthcare team for further explanation of his test results and to determine what individual treatment is best for him. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with his healthcare team or aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a 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-specialist Having a partnership between educators, family members, peers and his health care providers is important, so that a plan for academic success as well as a plan for safety, management of emotional or behavioral dysregulation and active social integration can be developed and evaluated on an ongoing basis. https://www.epilepsy.com/article/2014/3/epilepsy-impact-life-childYou may want to consider having your son in law see a neuropsychologist, (an expert in assessing brain function) to adequately determine their individual strengths and weaknesses and make recommendations about schooling. Psychologists can also measure a child's adaptive level, or ability to manage common daily activities. Obtaining an accurate picture of a child's potential requires an assessment by professionals from different fields. By integrating the different observations and test results,these professionals can reach a depth of understanding that could not be provided by one person. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/when-its-more-just-seizuresTo learn more about the role of neuropsychologist, psychologist and social workers play in the treatment of epilepsy, visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-teamIt may be helpful to keep 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, setting reminders, recording medical history & other therapies, moods, behaviors, and triggers, that may affect seizures and wellness, which can be shared with his healthcare team. 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, or contactus@efa.org. epilepsy.com/helpline

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