It can be difficult to deal with your child’s infantile spasms. It can be hard to watch your child suffer. You live every day in fear and all you want to do is make your child feel better. You feel helpless because you never know when your child’s infantile spasms will act up again.
According to the National Institute of Neurological Disorders and Stroke,”infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and early childhood known as West Syndrome. The onset is predominantly in the first year of life, typically between 3-6 months. The typical pattern of IS is a sudden bending forward and stiffening of the body, arms, and legs; although there can also be arching of the torso. Spasms tend to begin soon after arousal from sleep. Individual spasms typically last for 1 to 5 seconds and occur in clusters, ranging from 2 to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age 5, but are often replaced by other seizure types. West Syndrome is characterized by infantile spasms, hypsarrhythmia (abnormal, chaotic brain wave patterns), and mental retardation. Other neurological disorders, such as cerebral palsy, may be seen in 30-50% of those with IS.”
Many parents are scared by their infant’s seizures. They have trouble leaving their children in daycares because the spasms are usually very frequent. Many child care providers do not know how to deal with infants who are suffering from infantile spasms. This forces many parents to have to stay at home with their child to make sure that they are taken care of.
The prognosis for children who have infantile spasms depends on a few factors. According to the National Institute of Neurological Disorders and Stroke, “The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve with or without treatment by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood.”
The prognosis for children with infantile spasms can be very terrifying for parents especially those who have just had their child diagnosed. Most of these children will have seizures for the rest of their lives. Others will also have developmental delays and will have problems learning when they are older.
As a parent you need to know how to cope with your child’s infantile spasms diagnosis. Here are some tips on how to cope with the diagnosis:
Talk to you pediatrician- you need to understand your child’s medical condition. Seizures are very serious. As a parent, you need to know what to do and who to call when your child’s seizures begin.
Do research on the Internet- you can find a lot of information about medical conditions online. It can help to simplify the medical jargon for you. You should research doctors that specialize in the condition and see if you can have a consultation with them.
Educate your family members and friends on the condition- your family members and friends need to know what to do when your child has a seizure. It is important to educate people that might watch your child so that they know how to help your child.
Relax and think positively- you need to relax and think positively about your child’s medical condition and prognosis. You need to be relaxed so that your child is relaxed.
Talk with other people who are going through the same thing- you need to talk to people who are going through the same thing. There are support groups out there for parents who have a child with infantile spasms. You need to talk about your feelings and you can get valuable advice from people who are facing the same situation.
It is important that parents understand their child’s medical condition. As a parent, you need to protect your child from harm and help them when they are dealing with medical issues. Hopefully, this information will help you deal with your child’s infantile spasms.