“Staying Strong for JD Epilepsy Awareness and Benefit Social,” you have probably seen these posters in the local businesses around town, advertising this fundraising event for JD Van Den Bosch and his family as they continue this journey that they are on.
JD Van Den Bosch is an energetic little boy who had his first seizure just before his third birthday on June 2, 2016. After the first seizure he had another one a week later and then he just kept having them one after another, week after week. On July 7, JD was diagnosed with Generalized Primary Epilepsy and on July 19 he was admitted to the Children Hospital in Winnipeg and was diagnosed with Doose syndrome. After the diagnosis last July, JD and his family have begun their journey of living with his Doose syndrome.
Now you’re probably wondering what Doose syndrome is and here is the answer. Doose Syndrome (MAE Myoclonic Astatic Epilepsy) is a childhood epilepsy syndrome that is often resistant to medication and can be typically difficult to treat. It is usually characterized by generalized seizures and can vary in the types and frequency of them. Many children tend to experience a large number of seizures daily which makes the condition extremely difficult to manage.
Doose syndrome generally appears in children between the ages of one and five who usually have an uneventful history. It is worth mentioning though that in some cases, there is a positive family history of seizures and family studies over the years have supported a genetic basis for it. Another interesting fact about Doose is that it is more common in boys than girls.
When it comes to Doose syndrome, the severity of it ranges from mild to those who are more severely affected by it. For the children that are only mildly affected by Doose, generally the first line medications can quickly and easily control their seizures. For the kids that are at the severe end of the spectrum of the Doose syndrome, finding an effective medication or treatment can be extremely difficult. JD falls into that area of the spectrum. His mom, Chantell said that they have tried many different types of medication and combinations to help control JD’s seizures, but they don’t help, in fact, they do the exact opposite and end up making him very hyperactive on top of already having been diagnosed with ADHD.
When it comes to bedtime for JD, Chantell says that because of the frequency of JD’s seizures she actually sleeps with him to keep an eye on him “It’s common, but uncommon for people with epilepsy to die in their sleep from having a seizure and I have a fear of that happening to JD.” She says that he also has sleeping issues and will wake up in the middle of the night and she doesn’t know if its a seizure that is causing him to wake up or what it could be. Chantell has spent pretty much every night with JD since he’s been diagnosed.
When it comes to the different types of seizures that are out there “i.e.” Absence seizures (also known as petit mal), Tonic-Clonic or Convulsive seizures (also known as Grand Mal), Atonic seizures (also known as drop attacks), Clonic seizures, Tonic seizures and Myoclonic seizures, JD has them all. Chantell said that when it comes to the Grand Mal seizures, they somewhat have those controlled with JD only having one to two of those a month. A good day for JD is only having five to 10 seizures a day and these seizures are usually a mixture. The most amount of seizures on record that JD has had in one day was 479, said his mom. JD also has a special helmet to wear to protect his head and face from when he has a seizure and might fall.
Funds raised at the social will be going towards purchasing a special bed for JD as well as medical expenses. The special seizure bed is like a gigantic playpen, it will keep him safe and will stop him from getting up and wandering around at night. It also has a seizure alert that monitors him and lets his parents know when he’s having a seizure. They’re also hoping to create more awareness about Epilepsy and Doose syndrome in the Westman Area as well. According to JD’s neurology nurse, he is the first or the second known case of Doose syndrome in Manitoba she has come across in her 30 years as working as a nurse.
If you are interested in attending the Social or would like to donate or help spread the awareness about Epilepsy please contact the following people Chantell Van Den Bosch - 204-596-8736, Mitch Van Den Bosch - 204-901-2883, Will Van Den Bosch - 204-922-0808, Arlene McDonald - 294-841-0487 or Chris Van Den Bosch - 204-232-4291.
by Kathy Carr