How to Respond to the Starting of Seizures

About a month ago, one of our family members with Down Syndrome started having seizures.  The first time it happened, we had no idea what to do and were caught off guard.  Since no one really talks about how to respond to seizures, I thought it would be helpful to pass on all I have learned so far:

1.     What to do if someone is having a seizure

We were told:

·        If needed, move them to a safe area away from sharp objects (such as: table corners- we ended up putting table edge guards on the corners of furniture in his home)

 

·        Loosen clothing by neck to help with breathing

 

·        Stay with person who is having a seizure and talk to them calmly (After the seizures, he would be very upset and confused. A calm loving voice helped calm him minutes later.)

 

·        Call 9-1-1 if seizure lasts longer than 5 minutes, if seizures occur back to back, or if you can’t wake that person up.

 

·        Do Not try to hold the person down or put anything in their mouth

 

2.     If you feel that your loved one’s medication is causing harmful side effects, please call the doctor immediately. It can save their life. We were really lucky that we didn’t lose our family member.  Initially, the doctors prescribed him a very low dosage of Dilantin to treat the seizures, but he had a horrible reaction to the drug.  The side effects varied, ranging from him losing normally bodily functions (walking, eating and going to the restroom), fainting spells, shallow breathing, cloudy eyes, and bleeding from his mouth. It was hard to watch him lose his independence. We contacted the doctor immediately, and they told us to go to the ER. We found out his Dilantin levels were extremely high ( almost twice the amount it should be) and his blood pressure was really low.

 

3.     Be an advocate for your loved one and push for the tests you believe need to be done. We ended up back in the hospital, and were lucky to have a friend tell us to get a Long Term EEG for two to three days.  The doctors at first didn’t want to do the Long Term EEG. They thought that they had enough information with a short one. They wanted to just work on lowering Dilantin levels. The Long Term EEG gave the doctors more information on the seizure activity and patterns. We are so glad that we pushed for that test because they found out that they misdiagnosed what kind of seizure he was having and immediately started him on a new medication. The new medication has made a huge difference. In two weeks, the seizures have stopped, and he has returned to a semi-state of normalcy (walking, going to the restroom, and eating).