Doose syndrome is a rare form of childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is around 3 years old. Children are usually developing normally before onset. Currently, the cause of Doose syndrome is still undetermined though genetic links are suspected.
Outcomes for children with the condition vary. For some children, seizure freedom does occur either through treatment or spontaneous remission. For others, seizures may persist into adolescence and beyond. While many things are beyond our control, the approach we recommend is one that seeks to maximize each child’s potential.
To do this there are two areas of focus. It is important to address the seizures themselves, working with medical professionals to eliminate or reduce their number and intensity. Equally important is addressing the impact the condition has both on the child and the family as a whole. The rest of this page addresses each of the issues in turn.
At times you may feel overwhelmed by information. Before we go any further, we want you to know that there is a group of parents who are walking the same path as you are right now. Many are further up ahead and we are here to reach back to help. Others are just beginning the journey. The group is there for you to ask questions, to vent and share your grief, and to share moments of joy, of which there will be many. We promise. You will need a network of support for this journey and we are here to help. You can find the group at www.facebook.com/DooseSyndrome.
Also, if you encounter terms that are not familiar to you we have developed a “Doose Dictionary” on the site that you can visit here. Let us know if you come across anything you don’t understand and we will try and address it on the site. You can submit questions here.