Q & A in coping with Epilepsy

When parents discover that their child suffers from seizures, it compounds the already huge parenting responsibilities.  Here are some tips on possible questions one may ask.

How will I find childcare while I work or a babysitter so that I can go out?

Finding good childcare is a challenge for all parents. As you interview childcare provides, start by asking whether the provider has experience in taking care of children with chronic medical problem. You want to get a sense of the provider’s ability to accommodate children with special needs. Next, inquire about the provider’s specific experience with epilepsy. You want to assess the caregiver’s knowledge of epilepsy, her openness to learning more, and her ability to meet your baby’s needs. Good caregivers may not necessarily have a lot of experience with seizures. However; she should be open to learning more about your child’s seizures and his special needs.

How can I help my child if she is slow to develop skills?

If your baby is having difficulty with the development of motor coordination (sitting, walking, holding objects), your neurologist can refer you to a physical therapist or occupational therapist for evaluation. If your baby does not seem to understand what you say or is slow to learn to talk, evaluation by an audiologist and by a speech and language pathologist is appropriate. These therapists can develop and carry out a treatment program or refer you to the agency in your community that provides these services. Between birth and three, these services may be provided in your home or day care setting. Besides working directly with your child, the therapists will give you and your day care provider activities to do with your baby between therapy sessions.

How will I manage my relationship with my spouse?

The infant years are a challenge for all couples. Every couple goes through a period of adjustment with their first child as they integrate this new life into their relationship. The adjustment becomes more family focused with subsequent children. The introduction of a seizure disorder into the picture tends to prolong the period of adjustment. For every couple with a new baby, the key to adjustment is communication. Good communication depends on having time together to talk to one another; time together when you are not too tired to talk. You may need to schedule time together or to call on relatives to help out so that you have time you need

How do I ignore my toddler, yet keep them safe?

Parents worry about their toddler becoming seriously hurt during a tantrum. Parents’ of toddlers with seizures have the additional concern that their child might have a seizure during or following a tantrum. Ignoring a tantrum means that you are not interacting with the child-it does not mean that you have stopped listening to her, or that you never ‘peek’ to see what she is doing. If your child is headed for danger, you interrupt the action, move her to safety, and resume your ignoring of the tantrum. If she has a seizure, you deal with the seizure as you would at any other time.

Who can help me during the Infant/toddler years?

Your neurologist and family physician or pediatrician can help you to know if your baby is developing at a typical rate during these early years. State-sponsored early intervention services will help you and your baby if development is slow. Your family physician and pediatrician may be able to help you develop plans to deal with some of the common behavioral problems that can occur during these years. A pediatric psychologist or child clinical psychologist can help you if behavioral problem persist in spite of your best attempts to address them.

How will I find a preschool for my child?

Many preschool children with epilepsy are developing language skills, intellectual skills, and fine motor skills at the same rate as other children their age.  In looking for a preschool for your child, you will want to interview the preschool staff about their experience with chronic medical conditions in general and epilepsy in particular.  Just as you have educated the parents of your child’s peers, you will need to provide teachers with a fact sheet to help understand your child’s needs.

Children with epilepsy can at increased risk for delay in the development of skills needed for succeeding in school. If you have concerns about your child’s development, discuss your concerns with the neurologists. Depending on your child needs, she/he may receive occupational therapy, physical therapy, and/or speech and language therapy in addition to the classroom program.


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