Aug 08, 2017
The patient was born early at 37 weeks and was found to have bruised eyes and bleeding in the space between his scalp and skull (subgaleal hematoma). At two days old, he was sent to the NICU for low blood sugar (hypoglycemia), but was released after two days.
Over time, the patient’s parents noticed that he was not meeting his developmental milestones. At 9 months, he did not roll or sit and still had a head lag. At 12 months, he was found to be at a 4-month-old level in terms of his developmental progress.
At 17 months, the patient was diagnosed with seizures (infantile spasms). A brain MRI at this time was abnormal (delayed myelination, thinning of the corpus callosum).
Since starting treatment for his seizures, the patient has gained some milestones. He is currently able to reach out to grab objects, sit with support, and support himself on all fours. With intensive rehab and a gait trainer, he has been able to walk. However, he is nonverbal. He has no chewing or swallowing difficulties, but does need to eat every 2-3 hours or else he has low energy (lethargy). He also used to have staring and screaming spells.
More recently, the patient has been seizure free with a normal EEG and is not taking any medications.
If this participant sounds like you or someone you know, please contact us
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