LuckyJoJo
Female / 2 years & 2 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 SymptomAt 3 monthsSevere
Ongoing Symptom
Observed at 3 months
Observed: Many times a Day
Severe
Delayed fine motor skills
Sign or SymptomAt birthParent 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 SymptomAt birthParent 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 DiagnosisAt 3 monthsVery Confident
Condition
Diagnosed at 3 months
Very Confident
Gene Mutation of PPP3CA gene
Condition or DiagnosisAt 4 monthsVery Confident
Condition
Diagnosed at 4 months
Very Confident
Treatments
2021
Steroids
Treatment or TherapyAt 3 monthsUnhelpful
Treatment
Began at 3 months
Unhelpful
Anti-convulsants
Treatment or TherapyAt 4 monthsNeutral
Ongoing Treatment
Began at 4 months
Neutral
Physical Therapy
Treatment or TherapyAt 5 monthsNeutral
Ongoing Treatment
Began at 5 months
Neutral
Occupational Therapy
Treatment or TherapyAt 5 monthsNeutral
Ongoing Treatment
Began at 5 months
Neutral
Doctors
2021
Dr. LaBianca Primary Care
SpecialistParent isn't sure
Specialist
Dr. Alana Golden Neurology
SpecialistRandal Childrens HospitalPositively
Specialist
Randal Childrens Hospital
Positively