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As a caregiver, it's important to always follow your gut instinct. If you feel something’s wrong, tell the doctor, and if the doctor doesn't do anything about it, find another doctor, and find somebody who will listen to you. Saber has Dravet Syndrome, which is a rare genetic epilepsy. Also, he is autistic. In order to get more control over seizures, I have to make sure that he takes his medication on time, that I take him to his appointments, that I get his EEGs regularly, and that I avoid all the seizure triggers, like avoiding things that make him excited, avoid any kind of temperature changes.
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For example, with my son, I have to stop giving him baths because every time he would get out of the bath, he would seize because of the temperature change, but I wipe him down with baby wipes and that's how we get baths. Once in a while I will give him a bath, but it's rare, and I know it sounds horrible, but you got to do what's best for your child.
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Now he can walk, but I put him in a wheelchair sometimes because when he starts running or playing or getting hot or spinning, this triggers seizures. Although sometimes I take him to Chuck E. Cheese, even though the excitement makes him have seizures, I feel that it's important to let him be a kid too. I have to call 911 six or seven times a year. As long as I'm avoiding his seizure triggers,
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then right now it's a lot less than it was when he was first diagnosed with epilepsy. If you have to call 911, you need to be prepared. You have to know what seizure first aid is and know how to give the rescue medicine. My son had a seizure. He vomited and there was throw up all over him, and he went unresponsive.
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I called 911. They tell me lay him flat and start CPR. As a nurse I knew he would aspirate. Just because 911 tells you to do something, you have to do what is right by your child. If you have to take your child to the hospital, grab the medicines because you don't know if they'll be in stock because it's so rare. You need to have a list of your child's medication.
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Know what times that they take the medication. You need a list of what doctors, the child has, and especially you need the neurologist’s phone number and address. Practical things that I do while I care for my son: I drink a hot cup of coffee. I get up early and just sit outside. I read a book. I watch TV. At least once a month,
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I go with my sister shopping, and if I'm really stressed out and I have a really, really bad day, I just take a long, long, hot shower. My name is Jolene Venuto. I'm a mom and a nurse. My son has severe epilepsy called Dravet, and I am a member of MyEpilepsyTeam.
Jolene Vanuto has learned a lot about helping people as a nurse. When her son Saber was born with Dravet syndrome, a severe form of epilepsy, she took on the role of caregiver in a different way. Watch how Jolene manages Saber’s daily routines to protect him from seizure triggers and offers advice about calling 911 for a seizure emergency.