Development and Education

Team Doose

Doose syndrome is listed as an epileptic encephalopathy because of the effects of seizures on cognition, and thus is in the same category as Landau–Kleffner syndrome and LGS it does tend to affect the developmental process, particularly until/unless seizure control is achieved. Children who were normally developing with peers may fall behind in their development.  Many of our children do end up ultimately with a typical level of intelligence and development, thus every effort we make to give them resources makes the likelihood that their outcomes will be better.  Often you can find these resources both privately (i.e. Children’s Hospital) and through the public schools. If you homeschool there are special needs resources through Homeschool Legal Defence Association.

Working with Educators

It is important to work closely with educators and schools as you approach sending your child to formal educational situations.  In many cases, your child will qualify for a meaning they will be given resources to support learning that is related to their level of need.  Our advice is to begin this process early.  Many school districts have early intervention programs you may qualify for and it helps immensely to get your child on their radar early on.

ADHD, Developmental, and Behavioral Medicine:

Those with Doose syndrome can be helped significantly by utilizing the resources available both through children’s hospitals, local school districts, and home health agencies.  Accommodations can be made, and a great deal of “catch-up” learning and development can be achieved through various therapies.

504 plans can help kids who need more support in public school. The name of this kind of plan can sound a bit scary. But the concept is straightforward. A 504 plan makes changes at school so that your child can learn.

Some people mix up 504 plans with special education. They’re not the same. Special education is special instruction for kids who need more than standard teaching. A 504 plan, on the other hand, is about making sure the classroom fits how your child learns.

For more information visit this guide.

Occupational Therapy

If your child finds it hard to do their schoolwork, job,  care for themselves, complete household chores, move around, or take part in activities then an evaluation for Occupational Therapy (OT) should be considered.

OT teaches us how to adapt. It can help someone living with Doose syndrome perform any kind of task at school, work, or in the home. Learning how to use tools (you may hear them called assisted devices) if needed. Think of fine motor development.

You’ll meet with a health professional called an occupational therapist who can come up with ways to change their movements so they can get their school work done, take care of themselves or their home, play sports, or stay active.

It can help you do specific things like:

  • Eat without help from others
  • Take part in leisure activities
  • Do office or school work
  • Bathe and get dressed
  • Do laundry or clean up around the house

Physical Therapy

Physical Therapy (PT) helps our children with the ability to move their bodies correctly. It includes strengthening and enhancing skills.  This is particularly important for fully participating in the classroom, at recess, work, home etc.  Think support with large motor activities.

Your doctor might suggest this type of treatment if your loved one with Doose syndrome finds daily tasks hard to do.

PT is care that aims to ease pain and help you function, move, and live better. You may need it to:

  • Relieve pain
  • Improve movement or ability
  • Prevent disability or surgery
  • Rehab after a surgery
  • Work on balance to prevent a slip or fall
  • Manage a chronic condition like Doose syndrome that is associated with core muscle weakness
  • Control bowels or bladder
  • Learn to use assistive devices like a walker, cane, or wheelchair
  • Get a splint, brace or Orthotics (AFO’s)

People of all ages get physical therapy. It can treat a variety of health problems.  You can learn more about it

Speech Therapy

Along with the other therapies children with Doose often have issues that develop around speech.  This again is the result of both the seizure disorder and the pharmaceuticals taken to treat the seizures.  Speech therapy helps us to learn to effectively communicate and overcome any speech impediments.

Speech therapy (ST) is the assessment and treatment of communication problems and speech disorders. It is performed by speech-language pathologists (SLPs), which are often referred to as speech therapists.

Speech therapy techniques are used to improve communication. These include articulation therapy, language intervention activities, and others depending on the type of speech or language disorder. Speech therapy is often needed for those living with Doose syndrome.

There are several speech and language disorders that can be treated with speech therapy. Below are some of the disorders that parents have identified as associated with Doose syndrome.

  • Articulation disorders. An articulation disorder is the inability to properly form certain word sounds. A child with this speech disorder may drop, swap, distort or add word sounds. An example of distorting a word would be saying “thith” instead of “this”.
  • Fluency disorders. A fluency disorder affects the flow, speed, and rhythm of speech. Stuttering and cluttering are fluency disorders. A person with stuttering has trouble getting out a sound and may have speech that is blocked or interrupted or may repeat part of all of a word. A person with cluttering often speaks very fast and merges words together.
  • Receptive disorders. A person with a receptive language disorder has trouble understanding and processing what others say. This can cause them to seem uninterested when someone is speaking, have trouble following directions, or have a limited vocabulary.
  • Expressive disorders. An expressive language disorder is a difficulty conveying or expressing information. If one has an expressive disorder,  you may have trouble forming accurate sentences, such as using incorrect verb tense. It’s associated with developmental impairments.
  • Cognitive-communication disorders. Difficulty communicating because of an injury to the part of the brain that controls your ability to think is referred to as cognitive-communication disorder. It can result in memory issues, problem-solving deficits, and difficulty speaking or listening.
  • Aphasia. This is an acquired communication disorder that affects a person’s ability to speak and understand others. It also often affects a person’s ability to read and write.
  • Dysarthria. This condition is characterized by slow or slurred speech due to a weakness or inability to control the muscles used for speech. It’s most commonly caused by nervous system disorders.

Behavior and Attention

Parents often find that second to the seizures themselves, behavior, and attention issues are some of their biggest problems.  Fifteen percent of children diagnosed with Doose syndrome develop some form of attention disorder (ADD/ADHD) almost 20% develop persistent developmental delays, 10% reported Autism according to REN (Rare Epilepsy Network) data,  and often behavior issues occur when medications are changed, weaned, or initiated.  We recommend asking your Neurologist to refer you to the Behavioral Medicine area, including asking for a Neuropsychological consult, and to begin working with the mental health and support physicians and psychologists in these departments. An example of this kind of department is here.

Your child may benefit from ABA (Applied Behavioral Analysis Therapy).

ABA Applied Behavioral Analysis

Applied behavioral analysis (ABA) also referred to as behavior modification is a type of therapy that can improve social, communication, and learning skills through positive reinforcement.

Many experts consider ABA to be the gold-standard treatment for children with autism spectrum disorder (ASD) or other developmental conditions. But it’s sometimes used in the treatment of other conditions as well.

Many experts consider ABA to be the gold-standard treatment for children with autism spectrum disorder (ASD) or other developmental conditions. But it’s sometimes used in the treatment of other conditions as well.

The goal of treatment depends largely on your child’s individual needs.

However, ABA often results in children:

  • showing more interest in people around them
  • communicating with other people more effectively
  • learning to ask for things they want (a certain toy or food, for example), clearly and specifically
  • having more focus at school
  • reducing or stopping self-harming behaviors
  • having fewer tantrums or other outbursts

Research suggests that for optimal improvement that over 20 hours of ABA is needed weekly. This is not possible or affordable for all families and some opt to create programs that are less intensive and incorporate caregivers. In addition, therapists are used to navigating the ins and outs of insurance and paying for treatment. Do not feel uncomfortable asking for their advice on how to get treatment covered.

Emotional Health

Doose Syndrome can feel like an overwhelming disorder to deal with both for the patient and the caregivers.  For that reason, it is important to give significant attention to issues of emotional health.  The epilepsy foundation has developed information and resources for these issues including recommendations for sleep, diet, exercise, managing stress, and dealing with depression.  These resources can be found here.