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Raising Awareness for ISweek.org #ISAW2018.

Raising Awareness for ISweek.org #ISAW2018.

Up until 3 years ago, I, like many other people had never heard of Infantile Spasms. It wasn’t until one of my best friends was given the horrifying news, that her beautiful baby boy had been diagnosed with the condition, that I became aware of it.

For those of you unfamiliar with the condition…

 Infantile spasms are a rare, but very serious type of seizure. Infantile spasms are caused by a condition in a baby’s brain and include repetitive, but often subtle movements—such as jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex. 

Source The Child Neurology Foundation website December 2018

This week is Infantile Spasms Awareness Week #ISAW2018 and I wanted to share with you (with her permission of course) the following post from my friend, which shows what they went through before receiving the diagnosis, to help raise awareness and inform.

*These images & captions are not to be reshared without prior permission*

Please just take a few minutes to watch this video as it shows how easilyInfantile Spasms can be misdiagnosed.

 

2 Minutes Could Save Your Child's Life, Watch This Video About Infantile Spasms

Your child may be developmentally delayed because of a potentially treatable form of epilepsy that is overlooked: infantile spasms are often misdiagnosed as colic, reflux, or exaggerated startled reflex because they can be very subtle. Watch this video to see the signs and know how to react in these potentially life-threatening situations with your baby. #ISAW2018 #InfantileSpasms #BabyCrunches Share in your communties.

Posted by Child Neurology Foundation on Sunday, 2 December 2018

For more information please visit ISweek.org and help spread the word #ISAW2018.

Infantile Spasms: What Every Parent Needs To Know

Infantile spasms can cause catastrophic damage to a child's brain – but many parents don't know what to look out for. Please watch and share our video and help us spread the word during Infantile Spasms Awareness Week (1-7 Dec). You can also find support and advice through our Facebook group at https://m.facebook.com/groups/1600888383553097 💜 #ISAW2018 #UKIST #infantilespasms

Posted by UK Infantile Spasms Trust- UKIST on Saturday, 1 December 2018

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6 Comments

  1. Rachel
    December 4, 2018 / 4:18 pm

    Thank you does not seem enough. The fact that you’ve taken the time to write a blog on our Joshie and Infantile Spasms has blown us away. Thank you so much for your support , you are truly a wonderful friend. Much love xxxx

    • December 4, 2018 / 7:58 pm

      Oh Rach, it’s the least I can do. You all went through so much, let’s hope brave, little Joshie’s story will help others. Love to you and the munchkins xxx

  2. Sara Fabian
    December 4, 2018 / 8:22 pm

    Thank you so much D. Just great to get the information out there. Xxx

    • December 5, 2018 / 11:07 am

      So true xx

  3. Georgina Gresty
    December 6, 2018 / 4:11 pm

    Hi it is great that you are raising awareness of this my son also suffered from infantile spasms when he was 8 month I had no idea what it was just thought it was odd baby movements. He then went on to have bigger seizures he was in hospital for a week now 3 years old and off medication and seizure free:)

    • December 6, 2018 / 5:20 pm

      Hi Georgina,
      That’s exactly why I wanted to raise awareness because like you, I would have put it down to baby movements. I am so happy to hear he is now seizure free, that’s great news. Wishing you and your family all the best.
      D xx

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