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Parents on Sleuth
Parents on Sleuth

Sleuth is a growing crew of parents working together for better answers.

We gather stories and info directly from parents. With smart technology, we help each other identify solutions, resources, and cures.

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Our stories matter and we care about the details. After all, we are the experts of our children. Here are some of our stories.

S.

S.

6 years & 4 months old

Do you have any other thoughts or advice you would like to share from this experience?

Early diagnosis is key and watch for loss of words. Sometimes it will be subtle and we dismiss it as the child just being too young.

Ellie

Ellie

21 years & 8 months old

Do you have any other thoughts or advice you would like to share from this experience?

Not at the moment!

Xam

Xam

3 years & 6 months old

Do you have any other thoughts or advice you would like to share from this experience?

Advice to other mothers would be to follow your gut- that “mom instinct” is there for a reason. Trust it. Push for answers for your baby. Be your child’s voice and advocate no matter how hard that may be. Today Max is 3 years old. He has spastic quadriplegic cerebral palsy, epilepsy, polymicrogyria and global developmental delay. He is the strongest, most amazing, most stubborn little boy you’ve ever met. He’s my hero.

K Bear

K Bear

2 years & 4 months old

Do you have any other thoughts or advice you would like to share from this experience?

IS is an absolutely terrifying diagnosis and googling it was a terrible idea. The statistics are old and bleak and do not take into consideration the awareness that has been raised and the new treatment options. I would highly recommend new families do not google infantile spasms (easier said than done but join a Facebook group and connect with families. IS is a symptom of an underlying cause. Comparing your child to another with IS is never a good idea. The outcome for these children can vary enormously and the underlying causes are massively varied. I would encourage any parent/family member who suspects a child has infantile spasms to film the movements, go to the nearest ER/A&E, a children's hospital is better and say they suspect the child has IS. It is classed as a medical emergency. The hospital should provide an emergency EEG. I have heard so many horror stories of families being sent home and children go undiagnosed for months or even years. Time is of the essence with IS.

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At 24 months old, among children with Cortical Visual Impairment

70%have started putting two or more words together
30%have not yet started putting two or more words together
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Sleuth was born out of frustration and hope: Frustration from endless hours scouring the Internet for clues about our children’s symptoms. Hope because we found other parents on similar journeys. What if parents could share their experiences with exactly the people who need them?

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Please use Sleuth responsibly.Content and stories on hellosleuth.com are not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or qualified health provider with any questions you may have regarding a medical condition.
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We’re called “Sleuth” to reflect parents who persist in the hunt for better information. But “Sleuth” also means a family of bears. We like that.

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