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Should we be worried? Possible seizure.

KSchallKSchall Member Posts: 18 Courageous
We have suspected my HIE son to have seizures for some time, however they have often been very brief and we are unable to record them for our neurologist.

today my son had another episode that lasted more than a minute and my wife was able to get about 20 seconds recorded. He does not appear to respond to her speaking or to touch.

Is this a possible seizure or would anyone be concerned?

https://share.icloud.com/photos/0u6mDE2qt4yZ6NCniotLxLPdw

Replies

  • poppy123456poppy123456 Community champion Posts: 21,227 Disability Gamechanger

    We are not medically trained here and will be unable to answer your question. Please speak to his GP or Consultant.

    I hope you get some answers soon. Good luck.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,612 Scope community team
    edited September 2019
    Hello @KSchall. It must be really worrying to witness and even more stressful to not know what's causing it. 
    When are you next meeting with the neurologist? It's probably a good thing you've been able to get the recording, even if it's only short. 
    If you're not meeting with your neurologist or a doctor for a while and you're concerned about your son's wellbeing, it might be worth seeing if you can move up the appointment or if you think it's more urgent, taking him to A and E.

    All the best to you all. Please let us know how you get on. 
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello @KSchall

    Unfortunately this is not something we can help with. If your son is having seizures, please tell his neurologist. Try keeping a diary of your son's seizures. When is his next neurologist appointment? If he has a prolonged seizure, go straight to the hospital. 
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    How are you today @KSchall
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @KSchall, I imagine this was worrying to witness. I hope you are all okay.

    How are things at the moment?
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  • KSchallKSchall Member Posts: 18 Courageous
    Thanks thanks for the replies, sorry it’s take me so long to get back.

    His neurologist is not concerned but his pediatrician is. So we have scheduled a 2nd opinion with a different hospital that has a highly rated pediatric neurology program( 4 th in nation) but have to wait until November because they are pretty busy. 

    He has a previously scheduled mri for next week and a 90 minute EEG we just scheduled for next month.

    hoping those provide more insight. He has had 2 of these episodes this week.
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @KSchall, I'm glad things are being done and that you have tests in the pipeline. I imagine it's still stressful to not know what is going on at the moment.

    I hope you are able to find some time out, to relax and look after yourselves. I really hope you don't have to wait too long for a second opinion.
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