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December 24, 2018
I’m going to try and put as much specific information I can. Thank you for any help.
My daughter is 6, development is close to an infant. She is wheelchair bound. Cannot sit up on her own. Is non verbal. Head has not grown much since 3-6 months old. Seizures started around 2 months old. Abnormal EEG, seizures began as Infantile Spasms.
Has been on numerous pharmaceuticals have helped but she continues to have seizures. Currently seizures happen most often when asleep and she is startled awake by a noise or movement. She will have anywhere between 5 and 20 seizures per day. Arms and legs will go stiff, eyes roll up.
She also has many uti’s. She has constipation but when stimulated will go and stool is softer after first part of bowel movement.
Feet are almost always cold. Stomach is often bloated. Is irritable often. Enjoys being held, hugged. Is sensitive to light. Sucks on fingers often.
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