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We are at a loss, lot of test but still no answers.
Tue, 10/29/2019 - 09:56My son is 18 months old, diagnosed with mild to moderate HIE at birth, mild myelnation delay( via MRI), gross motor and speech delays, hypotonia and hypertonia, macrocephaly ( 20.9 inches at 17 months).
Since September of 18 we have suspected seizures, however his neurologist has not taken our concerns very seriously ( in our opinion) but he has had 3 EEG( 30 min) that all show normal activity. We finally recorded him having an episode but neuro says it’s behavior related. All his other doctors/therapists believe it to be a seizure.
The event lasted over a minute but could only manage 20 seconds or so on the recording. She did tap his nose/forehead with no response.
We are lost. What should we be asking our sons doctors? Thoughts, suggestions are really appreciated and needed.
Hi, Thank you for posting and
Submitted by Anonymous on Tue, 2019-10-29 - 10:38
Hi, Thank you for posting and we understand your concerns. We cannot determine if these episodes you describe your son experiencing are seizures, or not. It's important that you all continue to follow-up with his healthcare team (that you're comfortable with) to discuss this further and if he experiences any changes in symptoms, behaviors, sides effects & moods to determine what individual treatment plan is best for him. If you all feel you cannot talk openly with his healthcare team, or you feel that you aren’t working towards the same goals, it may bet 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-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety, & find self-management tools. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyAdditionally, you may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording his medical history, managing medication& other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with his healthcare team. It’s 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 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