50% of children with Epilepsy become nearly seizure-free with the first medication they try.
We want to talk about the other half.
Though many children do respond well to the second or third medication they try, there are numerous others who live regularly with seizures. It’s your neurologist’s job to recommend appropriate intervention, but meanwhile, we’ve got some tips on how to live safely with seizures from other parents who have been there, done that.
Many kids who have seizure disorders wear helmets to protect their heads in the event of a seizure. The Danmar company produces several helmet models for children and adults which many people are happy with. They provide measuring instructions to help you order the correct size, but it’s best to go to a good orthotics/prosthetics provider to get a good fit (and insurance coverage, too 👍).
We’ve heard positive feedback from parents about:
Elite O&P in Springfield, NJ
732-795-0603
Boston O&P in Manhattan
212-727-2011
You can create a safer environment for your child with a seizure disorder by cushioning hard surfaces to prevent bruising. Many families put soft mats on the floors in the rooms where their child spends the most time and cushion any tabletops where their child eats or works. There are many soft flooring options available on the market, including roll-out mats, puzzle tiles, and more. Martial arts mats work well for this (many options are available on greatmats.com), and regular foam puzzle playmats are a more affordable option (many options are available on Amazon).
Nighttime Safety
There are various ways to track your child’s seizure activity. Some parents keep a seizure diary, but for nighttime seizures, something more may be needed. Speak with your child’s neurologist or epileptologist to determine which device would be the most suitable for your child.
One popular option is the SAMi camera, which is trained to record seizure activity and alert the parent when a seizure occurs.
Another device is the Emfit monitor, a pad beneath the child’s mattress which detects the rhythmic jerking of a tonic clonic seizure and alerts the parent.
An alternative is a typical pulse ox machine with an alarm, which measures vitals and notes when the child’s heart rate or blood pressure drops, common occurrences during seizures.
These devices can be pricey, but we know of a couple of grants which can help:
Many children with seizure disorders require a specialized bed setup to protect them from nighttime falls. A typical padded side rail can serve this purpose, but for some kids, it’s just not enough.
Cubby beds are a popular option for keeping children with special needs or seizure disorders safe and comfortable at night. With high, mesh walls, the child feels secure, but not locked in. There is a video camera for monitoring and you can set up safety alerts for movement. Best of all, many insurances will cover the cost of a Cubby bed.
Support
Coffee with Friends is an interactive texting support group (accessible from kosher phones) for moms of children with Epilepsy. There are no medical professionals on the group, but many of the mothers have been dealing with these challenges for years and have a lot of valuable experience to share.
They have a sister group for moms of children who are on the Ketogenic diet to control their seizures.
Coffee with Friends also hosts in-person get-togethers twice a year in Lakewood, and occasionally in Monsey and other areas.
For more information or to join Coffee with Friends, reach out to Breindy Gelbfish at (732) 664-2193.
Mrs. Goldstein wasn’t ready to send her little 7-year-old Dovi to a sleepaway camp just yet, but keeping the adorable child with special needs home for the summer just seemed like a nightmare in the making. She called Ezreinu, and got information about two local day camp options which could work for Dovi, so that she could get a break while keeping him in sight. ⬛
When it became apparent that Gitty, the Newmans’ newborn baby, had special needs and would need a lot of intervention to thrive, many well-meaning friends and family began to throw advice and ideas at the overwhelmed family. Confused as to where to begin, Mrs. Newman reached out to Ezreinu and received clear information about several helpful government services and who to contact first. ⬛
The morning of his brother’s wedding, Mr. Braun got a call that their babysitter had cancelled on them. His daughter has medical conditions which require constant supervision, and finding a new arrangement so last-minute was proving to be impossible. Ezreinu sent a volunteer to care for his daughter for the entire wedding and for sheva brachos as well, so that the family could enjoy the simcha fully. ⬛
Identifying details have been changed to protect client confidentiality.