Because Doose syndrome is rare, many medical professionals may not be as familiar with it as you will become, and we often hear of parents “educating” the professionals. As a complex medical condition, those with Doose syndrome typically benefit most from a multidisciplinary care approach. We encourage you to learn all you can to make sure your child is pursuing the right treatments, seeing the correct specialists, and receiving appropriate therapies and care to optimize their potential outcome. We are here to help!
This site will help you know the options. Finding the right mix of treatments and therapies is most often trial and error. What works for one child may not for another. For some, the answer comes quickly, but for most, the journey is long and can be full of obstacles and setbacks, but with perseverance, the right perspective, and a community of support – the journey can not only become bearable but extremely rewarding.
Life is difficult with Doose syndrome, but there is hope.