R

RosieSue

Female / 5 years & 3 months

RosieSue’s Journey

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

She couldn’t hold her head up till after a year old. She was very far behind her twin brother who was hitting milestones right on time or early. She was a floppy baby. She couldn’t coordinate suck swallow and breathe. She barely ever cried or made noise. Didn’t start babbling till over a year old.

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

We are still working on getting a diagnosis. I kept pushing to see neuro for these staring spells she would have. Finally after genetics couldn’t figure her out they passed us on to neurogenetics and he is trying to figure out what’s going on.

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

RosieSue's parent hasn't answered this question yet.

Timeline

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

RosieSue’s Notes

Signs & Symptoms

2020

Global developmental delay

Sign or Symptom
At birth
Moderate

Ongoing Symptom

Observed at birth

Observed: Always

Moderate

Delayed speech or vocabulary

Sign or Symptom
At birth
Very Severe

Ongoing Symptom

Observed at birth

Observed: Always

Very Severe

Difficulty swallowing

Sign or Symptom
At birth
Moderate

Ongoing Symptom

Observed at birth

Observed: Always

Moderate

Seizures

Sign or Symptom
At birth
Moderate

Ongoing Symptom

Observed at birth

Observed: Many times a Week

Moderate

Doctors

2020

Dr Laurence Walsh

Specialist
IU Health Riley
Very Positively

Specialist

IU Health Riley

Very Positively

Taylor Wang

Specialist
Parent isn't sure

Specialist

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