TSJ2019
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TSJ2019, April 23,  2021  4:06pm EST

Hemifacial spasm

Our 20 month old son suffered a left parietal ischemic (stroke) either right before, during, or right after birth. Seizures at birth, stroke confirmed by MRI in the NICU, is now off all seizure meds. He has been doing well and is in Early Intervention. Vision is good, hearing good, developing on target. He's had some eye twitching for most of his life, mostly on the right but sometimes on the left. We've recently discovered that the twitching actually involves other ****** contractions like part of the cheek and mouth. This is so slight and fast it is hardly noticeable and impossible to see the ****** involvement unless watched in slow motion video. 
So we believe this may be hemifacial spasm. Confused about why it sometimes happens on the left. Confused about whether this is an after effect of the stroke or something totally unrelated. Trying to decide if another MRI is needed. Our neurologist is kind of on the fence. Has anyone else had hemifacial spasms resulting from stroke? Or other experience with this? Thanks. 

2 Replies
  • AHAModerator
    AHAModerator, April 23,  2021  4:21pm EST

    Good afternoon,

    Thank you so much for sharing your son's story with the support network. I am sorry to hear that he may be experiencing these hemifacial spasms. I encourage you to work with your neuro team to find the best line of treatment for your son. While you continue to interact with others here on the support network who may have similar experiences, I can share a few resources with you like the Stroke Family Warmline and this piece on Pediatric Stroke.

    Please keep us updated on how your son is doing!

    Best wishes,

    AHA Moderator 

  • AmbassadorMK
    AmbassadorMK, April 24,  2021  9:49am EST

    Hi,

    I agree with the AHA Moderator that you should continue to work with your son's medical team. And get a second opinion from another neurologist, or two. Are you in an area with a good pediatric stroke team? It may be worth going outside your area if you need to get more opinions. You can also try the KISS Facebook group to see if there are other parents who have seen this in their child, but it's always best to get a good, knowledgeable medical team to do the evaluation and testing.

    Warm regards,

    Ambassador MK

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