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Hi.

We are just two regular parents who had something unexpected happen to us: we were surprised to have a child with Down syndrome, and ended up getting a Sensory Processing Diagnosis for our son a year later. Our journey has been wild, but wonderful. We want to share our story, and hear yours too!

Episode 09 - Lulu's Very Dramatic First Winter, Part 1

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Lulu pre-Infantile Spasms

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Lulu about 2 weeks after her first seizure

In this episode, we discuss:

Lulu’s first winter, and the beginning of some fairly serious health problems that started when she was about six months old. On December 31st, 2015, she had her first seizure, and we talk about the process we went through to get the diagnosis confirmed. Sharon talks about the first time she ever felt like she knew better than the doctor, and why we felt so powerless.

Links we mention in this episode:

  • The article from noahsdad.com, where he details the symptoms of infantile spasms, and includes a video of a baby having a seizure. This was, by far, the most helpful resource to us when we were unsure about Lulu’s diagnosis. It’s very comprehensive and worth a read for any parents who need information on Infantile Spasms.

  • The article from the National Institute of Health that calls Infantile Spasms “catastrophic childhood epilepsies”.

Thanks for listening!

Thanks for tuning in! If you have something you would like to share (like your favorite stories from 2018!), you can leave a comment below, send me an email, or find me on Instagram at @specialstorey.

Also, please rate and review the show on iTunes here! It really helps others find the show, and we’ll give you a shout out on the podcast! It’s our little way of saying thank you.

Episode 10 - Lulu's Winter of Drama, Part 2

Episode 08 - Our favorite stories from 2018