As Halloween approaches, kids of all ages are busy feverishly selecting their latest Halloween costume, day dreaming about the endless supply of sugary goodness that awaits them, and deciding on how they are going to carve their pumpkin. And while the spirit of Halloween is in the air so too is the concern of parents of children with epilepsy on how best to keep their child safe while trick-or-treating as well as how to reduce the likelihood of seizures.
Re-posted from Epilepsy.com by Jenna Martin. Click here for the full article.
Photosensitivity Epilepsy & Halloween Safety
Cindee Boller’s youngest daughter Megan, age 12, has photosensitive epilepsy which is triggered by visual stimuli. “Since her diagnosis several years ago we’ve been able to redirect Megan away from places where there are strobe lights such as haunted houses without really calling attention to it,” said Boller. “Our goal is to make sure she has fun on Halloween without feeling self-conscious about her epilepsy or fearful that she might have a seizure around her friends.” Boller admits that this Halloween may prove to be more difficult. “Megan is at the age where she wants to be more independent, which is completely healthy and normal. But, because she has epilepsy which can be triggered by any of a number of stimuli either my husband or I have to be there with her while she is trick-or-treating even if we follow the teenage rule of walking eighty paces behind.”
Megan’s Halloween spirit seems no less hampered by her avoidance of haunted houses or other flashing lights. With her close friends by her side and their awareness of her seizures and potential seizure triggers she feels more confident in her ability to trick-or-treat just like any other kid her age. “If there is a strobe light at one of the houses in our neighborhood my friends will understand that I can’t go to that house to trick-or-treat and we will go to the next house. It’s really not a big deal,” said Megan.
It’s All About the Candy, But What About Dietary Restrictions?
Children with epilepsy on the ketogenic diet or Modified Atkins diet have special dietary restrictions according to Dr. Eric Kossoff, Assistant Professor of Pediatrics and Neurology, Johns Hopkins Children’s Center. Both diets significantly restrict carbohydrates, and chocolate bars and other candy given out at Halloween are about as pure carbohydrates as you can buy. The temptations of cheating can seem almost insurmountable to some parents and trick or treating might be completely avoided.
Kossoff knows all too well the challenges parents of children on these diets face during Halloween. “Many ketogenic diet centers will have special Halloween parties at the hospital or an outside location as it can be difficult for children. Also, many of our families at Johns Hopkins on both diets will make their own treats (keto-friendly) at home.” He also encourages parents to have non-food items as treats available at home such as games, toys, and money, thus taking food out of the fun factor equation. “It’s always nice to start new Halloween family traditions, such as dressing up, watching scary movies as a family, and going to farms for pumpkin picking and hay rides. Eating doesn’t have to be part of any of those activities.”
As a mother of a son on the Modified Atkins diet, Susan Littlefield has first-hand experience with using non-food items as treats on Halloween. “Our son actually goes trick-or-treating for candy and then we buy his candy from him and reward him with a new game that he wants. We also have a Halloween party each year which I think our son likes a whole lot more than candy, but every child is different.”
However parents of children with epilepsy on special diets choose to help celebrate Halloween, both Kossoff and Littlefield agree that candy is a big No-No.
Trick-or-Treating Safety Tips for Parents/Caregivers of Children with Epilepsy
- Make sure your child doesn’t forget medications that evening.
- Watch out for strobe lights if that’s a trigger for your child.
- Make sure your child either has a teenage “buddy” with them or you go with them – if a child has a seizure around other children trick-or-treating, they might be ignored with all the chaos and noise of the evening.
- Don’t stay out significantly later than your child’s bedtime.
- Make sure your teenager has a cell phone with them and someone is home to pick them up if they are trick-or-treating a distance that would be prohibitive to walk back.
- If your child is on the ketogenic or Atkins diet, it’s ok to get candy and dress up, but NOT to eat the candy without explicit permission.
- Make sure your child or teen wears their medical alert bracelet while trick-or-treating if they have one.
- Make sure your child is accompanied by someone who knows about your child’s seizures and what to do in case of a seizure emergency.
How American Medical ID Can Help
If you have epilepsy, you should be wearing a medical ID bracelet at all times – and it is especially important when you are traveling or just away from your home for a few hours. Medical personnel need to be immediately alerted to your condition so they can treat you as quickly and effectively as possible during an emergency. At a party or an event, you never know when you might be separated from family or friends who understand your condition, which makes a medical ID essential. American Medical ID recommends engraving your epilepsy alert bracelet like this:
- FIRST AND LAST NAME
- EPILEPSY OR OTHER MEDICAL CONDITION
- MEDICATIONS AND ALLERGIES
- IN CASE OF EMERGENCY CONTACT NUMBER
- DR. TELEPHONE NUMBER