My sister and her family feel so lucky to have been in great hands at Duke Medical Center where little Magnus has made improvements in decreased seizure frequency, regained vision, improved fine and gross motor movements. He's on his way to normalizing his developmental trajectory, but he and his family could use a Booster Club! They certainly could use some help with funding to continue making sure that little Magnus has access to all the best care.
Here's a little information about Magnus' condition. Given the risks of delayed identification and diagnosis to any children who experience Infantile Spasms, please share, even if you're not in a position to donate to Magnus' cause.
Infantile spasms (IS) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. A few children may begin as late as two years. About 1,200 children in the US are diagnosed each year with IS. It often has a very subtle appearance so it is difficult for parents to recognize that it is a serious problem. When most people think of a seizure disorder, they may think of someone falling to the ground and having all-over body convulsions. It is very obvious when that happens that there is something wrong. Many people seeing a seizure for the first time are quite scared; while others may think that the person is going to die.
A young child having infantile spasms, on the other hand, may just have little head drops that do not appear to be anything serious. However, it is a much more serious seizure disorder than the generalized convulsion. Not only is it difficult for the parent to realize that this is a seizure disorder, it is also challenging for pediatricians. Infantile spasms are so uncommon that most pediatricians will see only one or two IS cases during all the years of practice. Also IS often looks similar to common disorders such as a normal startle reflex, colic, or reflux. It is very important to recognize that a child has IS as soon as it begins because there are medications that may control the spasms the longer the spasms last before they are treated and controlled, the poorer the child may do developmentally.
Unfortunately, children who develop IS are at great risk for developmental disability and autism, but some children will do well if they are treated early. Because the spells may be subtle, the diagnosis may be delayed for weeks or months