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11 year old son

Tue, 02/25/2020 - 12:22
I am looking for some advice/guidance. I have an 11 year old son that during the summer had an incident that the neurologist believes was a seizure (he had 2 back to back). He had an MRI which came back negative, although he moved so much and there were so many blank pictures I am amazed that they could call it negative instead of inconclusive. He then had an EEG and it came up abnormal for focal slowing of the left temporal lobe. He was born premature at 29 weeks and had a grade 1 brain bleed which they say resolved. The neurologist has us in a "wait and see" protocol right now because she doesn't want to treat him with medicine if he doesn't have any more seizures. I am OK with them holding off on medicine until they know more but I cant help but be worried that they missed something on the MRI. He has had increased headaches since the episode and a few strange feelings that have made me nervous. Last night he said before he was asleep he was laying in bed and he felt like his whole body jumped and jerked him to his side. He said that he felt like he couldn't control his body and his legs felt a little tingly and numb afterwards. I am trying not to make too much out of every thing he tells me because he is a bit of a nervous kid and I don't want to worry him more. I did tell him to start keeping a log. Any advice would be greatly appreciated.

Comments

Hi,Thank you for posting and

Submitted by Anonymous on Wed, 2020-02-26 - 09:19
Hi,Thank you for posting and we understand your concerns. It’s important that you all are continuing to express your concerns with his neurologist regarding his MRI results and these new symptoms your son has been experiencing. It is great that you have recommend your son keep a log of how he’s feeling and if he experiences any more episodes, like the one you describe him having before bed a few nights ago. Documenting his experiences in detail, like you’ve done in your post will be extremely helpful to review with his neurologist. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking these episodes, setting reminders, managing medications, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect 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 [email protected]. epilepsy.com/helpline

It is not unusual for the MRI

Submitted by Patriotrehab on Wed, 2020-02-26 - 18:28
It is not unusual for the MRI to come back normal even with an abnormal EEG in the case of epilepsy. Actually in most cases of epilepsy, they can’t see anything on an MRI so that could be why the doctor is in the wait and see mode and not too concerned about how much he moved during the exam. That being said, it is good that you are having your son keep a log. I would encourage him to write down anything that he experiences as unusual that he is unsure of even if he’s not sure because there are all kinds of things that are seizures that we don’t often think of as seizures and that don’t impair awareness or affect our body movements. If he continues to report things and you haven’t witnessed a seizure, especially at bedtime or during sleep you may want to talk with the neurologist about an extended video EEG monitoring to assist with diagnosis. This requires hospitalization usually for 3-7 days, but it’s worth it because they try to capture a seizure or more while he’s there and in some cases they can even try to get a high resolution MRI while he’s in the hospital, which could ease your mind by redoing it if the insurance will authorize it. If you mention that he seems to be anxious and moved quite a bit on the last one they may be able to give him some medication to help him with the MRI. 

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