With Doose syndrome, the issue of safety is of paramount concern. The nature of the seizures creates several safety issues both at home and outside the home. At Home, there are two major issues to consider, falls and lengthy seizures. First is the danger to the child that can result from falls. Myoclonic-Atonic seizures (formerly called Myoclonic astatic seizures and also referred to as Drop Attacks by parents) can lead to sudden falls. These seizures can occur at any time and without warning. This means that a child can be walking, playing, or at the top of the stairs, and suddenly drop straight down to the ground. The danger is, of course, what happens when they fall suddenly. If a child is near the sharp edge of furniture, for example, they can suffer cuts and perhaps even concussions that need emergency attention. If they are walking downstairs, they may fall down the stairs and incur significant injuries. Also, children can have seizures while they are eating and face plant in their food or plate where they are sitting.
Now for some solutions. Your neurologist and/or hospital can have your child fitted for a helmet that offers protection wherever they go. Examples of these helmets can be found here. Some parents have also used off the shelf solutions like hockey helmets but starting with these medical devices from your health providers should be your first step. Second, parents who have homes with staircases have purchased baby gates that prevent the children from going up or downstairs without a caregiver being present. Third, parents have used their creativity to make things like pool noodles into protective barriers around things like the edges of furniture, fireplaces, etc. And finally, you can purchase protective mats and eating utensils that help prevent injury while eating. Examples of these can be found here.
Regarding prolonged seizures, one of the chief concerns is what happens overnight. Some children with Doose syndrome have nocturnal tonic-clonic seizures that parents may not pick up on if they are not in the room or have some sort of monitoring in place. If these seizures persist for a prolonged period without detection, they can be deadly. Parents have taken precautions to mitigate this problem. Some parents co-sleep with their children. This allows them to continually monitor the child with the downside of getting less sleep. This also does not guarantee that you will not miss a seizure if you sleep through one.
Other solutions include medical devices that function as motion detectors. In the US the FDA has not allowed them to be called seizure monitors, but in Europe, these devices are called seizure monitors. There are several options for monitors and devices that you can explore at the Danny Did foundation. Danny Did also provides some of these to parents who otherwise can’t afford them. It’s important to note that with the overall cost of care for our kids, you do not necessarily have to be low income to receive financial support. It is always worth inquiring about.
In addition to these unique issues, Doose syndrome families face another issue that all people with seizure disorders should be informed about and that neurologists do not always discuss and that is SUDEP (Sudden Unexpected Death in Epilepsy.) This is similar to SIDS (Sudden Infant Death Syndrome) and is not fully understood. To learn more about it you can also visit the SUDEP Institute the Danny Did Foundation or the Chelsea Hutchison Foundation, who also supply grants to families with epilepsy.
For issues outside the home, it is important to always have emergency plans in place whether you are out with the child yourself or if the child is at school or childcare. You will generally work with your doctors to establish such plans. You will likely be given a rescue medication (often Diazepam) that can be administered rectally in the event of a prolonged seizure. When your child gets older or becomes an adult there are often more suited emergency medications (midazolam) that involve a more discreet delivery method, like nasal administration.
You will also need to work with a school nurse or other personnel at educational facilities and get the information from your doctor (Usually called an Emergency Seizure Action Plan) Template for Seizure Action Plan: that will allow them to administer rescue medications, call for emergency services, and otherwise know how to work with your child in an emergency. It is also important to work with teachers and caregivers so that they know what to expect, and if possible help to make the environment safer for your child. Schools and seizure preparedness
In the end, the key is monitoring your child at all times. Some devices allow you to do that with technology even if you are in another room or if your child is at school. Other devices like baby gates and pool noodles allow you to avoid accidents during seizures. Children should not be allowed to be alone near water, bathtubs, or swimming pools because the risk of drowning is significant during an unmonitored seizure.
While much of this journey is confounding and sometimes without clear answers, this is one area where parents can feel a sense of accomplishment as they take concrete actions to protect their children. It’s something most of us have done even with typical children during the baby proofing stages of our lives