Posts Tagged Infantile Spasms

Infantile Spasms (IS) – An FAQ

HEALTH ALERT: Parents, be advised that if your baby has Down syndrome, they have a 10% (1 out of 10) chance of having Infantile Spasms (a form of baby epilepsy). This is an under reported disease in infants with DS.

It shows up around 3 to 12 months of age and presents as a strange “Salaam” motion –the hands come together at the chest area and arms are extremely rigid. The legs also contract and the knees come up. The baby usually cries out during an episode. We have summarized what you need to know in this entry so that you can become familiar with IS and how it is treated. It is critical that you bring your baby to the emergency room for immediate care. This must be treated or brain injury will result.

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Steroids and High Intraoccular (inside the eyeball) Pressure – Part I “Discovery”

Swollen Cheeks (Edema) Due To Prednisone

Swollen Cheeks (Edema) Due To Prednisone

Our daughter was on steroids for nine months for Infantile Spasms (IS). During this time she experienced steroid-typical edema –high water pressure in her body, especially in her eyeballs which is dangerous because the tissues in the eyes, such as the optic nerve, be damaged during this time. High eyeball pressure is associated with baby glaucoma and is serious business. If left untreated, a baby can have serious damage to the eyes leading to poor vision or to loss of vision. Even mild vision loss is serious as it can lead to developmental delays in both social and education learning.

Unfortunately, we didn’t have a base line for her eye pressure prior to the discovery of seizures. Why would we? She was five and a half months old when we finally figured out she has IS and most babies don’t get eye tests until they are older unless they have a noticable problem with their eyes at birth, for example. Without a baseline measurement, we didn’t know if she was born with high eyeball pressure or if it was a side affect of Prednisone. Our bet was on the drugs. So was Dr. Granet’s who taught us, “Never bet against the child; you’ll always lose.”

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