LuckyJoJo

LuckyJoJo

Female / 1 year & 10 months

LuckyJoJo’s Journey

Share the first part of LuckyJoJo's story for readers on Sleuth! When and why did you start to feel concerned?

Lucky started experiencing infantile spasms about 2 months ago, when she was just 3.5 months old. They were subtle movements that I only caught because 1. She is our first baby- so we stare at her all the time and 2. It was happening in a cluster. Prior to these spasms, Lucky seemed to be slow in reaching milestones (although she was still very young), but was healthy.

What was your experience, if any, seeking a diagnosis or treatment?

Because Lucky's spasms were in a cluster, I was able to capture them on video and send them to my pediatrician that day. We went in and were directed to the ED, where we were admitted and got an EEG the next day. After googling "baby having spasms" I saw a video of infantile spasms and knew that was what Penny had. I was able to find several facebook support groups which have been exponentially helpful in offering advice and support!

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

Just keep swimming!

Timeline

Below is a timeline of LuckyJoJo’s observed symptoms, diagnosed conditions, and treatments and therapies.

LuckyJoJo’s Notes

Signs & Symptoms

2021

Seizures

Sign or Symptom
At 3 months
Severe

Delayed fine motor skills

Sign or Symptom
At birth
Parent isn't sure

Ongoing Symptom

Observed at birth

Frequency: 142's parent isn't sure

Severity: 142's parent isn't sure

Delayed gross motor skills

Sign or Symptom
At birth
Parent isn't sure

Ongoing Symptom

Observed at birth

Frequency: 142's parent isn't sure

Severity: 142's parent isn't sure

Diagnoses & Conditions

2021

Infantile Spasms

Condition or Diagnosis
At 3 months
Very Confident

Gene Mutation of PPP3CA gene

Condition or Diagnosis
At 4 months
Very Confident

Treatments

2021

Steroids

Treatment or Therapy
At 3 months
Unhelpful

Treatment

Began at 3 months

Unhelpful

Anti-convulsants

Treatment or Therapy
At 4 months
Neutral

Ongoing Treatment

Began at 4 months

Neutral

Physical Therapy

Treatment or Therapy
At 5 months
Neutral

Occupational Therapy

Treatment or Therapy
At 5 months
Neutral

Doctors

2021

Dr. LaBianca Primary Care

Specialist
Parent isn't sure

Specialist

Dr. Alana Golden Neurology

Specialist
Randal Childrens Hospital
Positively

Specialist

Randal Childrens Hospital

Positively

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