In 2018 Scarlett & her husband welcomed their second child Arli, a little sister for their son Huey. At around 5 months of age Scarlett started to notice something was not quite right,
Arli would have very short and subtle spasms, sometimes diverting her eyesight or going stiff in her limbs. Unable to catch it on video and their concern understandably growing they took Arli into Emergency, where she wasn't dismissed and told it was anything to be concerned about and that she was merely "getting a fright".
In this episode Scarlett talks us through the devastating diagnosis and gives us all a greater understanding of what Infantile Spasms are, what they look like and how serious the implications can be if they are misdiagnosed in infants. She explains the extensive testing/hospital & GP visits involved, trialling over 10 medications all of which have been unsuccessful and the ongoing therapies needed for Arli to make progress and thrive.
We chat about the daily reality of caring for a child with special needs and the impact this has had on them as a family.
A mothers intuition is like no other and Scarlett is the epitome of this: following her gut feeling from the very beginning and having such incredible knowledge and understanding of her daughters condition she continues to advocate and fight for Arli and bring awareness to this rare form of Epilepsy.
Finally we discuss the level of acceptance she has reached moving forward and offers advice to parents who suspect their child might be having spasms and urges all parents who are concerned to follow their gut and not to be dismissed until they get some answers.
I am so incredibly grateful for Scarletts time and honesty, below i will link some helpful resources recommended by Scarlett, If you would like to follow Aril's journey, please reach out to Scarlett on her Instagram linked below:
Scarletts Instagram: https://www.instagram.com/scarlettrose52/
Ookami Kids: https://www.ookamikids.com/?fbclid=IwAR1XlMD9SHJo1_X-RrnKjOcrovQkJd0s31c0YD5QxQNXx6vjhQOfQmDtbHE
Sound Connections Music Therapy: https://www.facebook.com/soundconnections.mt/
The Infantile Spasms Community Discussion Group: https://www.facebook.com/groups/infantilespasmscommunity/?ref=share
Parents of Inspirational Children Ballarat: https://www.facebook.com/groups/377756089980057/
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