Caring for a child with Lennox-Gastaut syndrome – it takes a village
Possessing a reliable help program is important to all of us. It is especially critical to the families of those living with Lennox-Gastaut syndrome (LGS), a extreme and uncommon type of epilepsy that affects an estimated 1 in 50,000 to one in 100,000 young children and up to four percent of children with epilepsy. Many families may be struggling with the demands of caring for a loved one particular with this condition &ndash a activity that might demand about-the-clock focus and help.
LGS is characterized by 3 key characteristics:
* a clinical triad of a slow spike-and-wave pattern on an EEG,
* impairment of cognitive function, and
* several varieties of seizures, which includes tonic (muscle stiffening), atypical absence (staring) and atonic (loss of muscle tone) seizures becoming the most common.
Regardless of therapeutic advances, LGS is challenging to manage as several youngsters call for about-the-clock care and continuous support from a assortment of wellness care pros. This can be taxing on parents and households and finding the correct combination of wellness professionals to offer optimal care for a loved one with LGS can appear like an overwhelming task.
&ldquoThere is no question that caring for a child with LGS can present numerous challenges and it&rsquos extremely suggested that for optimal care, a child&rsquos health care team be integrated from the start off,&rdquo says Patricia A. Gibson, M.S.S.W., director of the Epilepsy Information Service at Wake Forest Medical Center in Winston-Salem, N.C. &ldquoSupport for these households continues to be much more readily offered as we understand a lot more and much more about this special situation.&rdquo
A wellness care team will probably consist of several physicians such as, but not restricted to, a pediatrician, neurologist, neurosurgeon, physical, occupational and speech therapists as nicely as physicians for dental and eye care. The greatest approach for each and every child is highly individualized and is consistently evolving.
Guidelines for identifying your LGS assistance group from Patricia Gibson
1. Discover a trusted resource in your nearby region
Your pediatrician or neurologist will frequently know about extra resources in your location. Looking for advice from other parents of children with developmental disabilities could also help you uncover nearby resources.
2. Ask the correct concerns
When identifying prospective members of your care team, don&rsquot hesitate to ask concerns to guarantee they meet your demands. For instance, how several other children with LGS or other developmental disorders have you cared for? Ideally, your care team will have knowledge with seizure disorders.
3. Look for assistance close to home
Your family members and social network are also an essential component of your team. Even though the challenges connected with LGS can place a strain on your family, it&rsquos increasingly important to band with each other. Speak to those you trust about your problems and concerns. Take your pals up on their delivers to babysit. Let them help you seek out resources.
four. Be patient
As you construct your group of professionals, try to practice patience and remember that your group will be a &ldquowork in progress,&rdquo adjusting as the requirements of your kid and family members continue to change more than time.
Added support and information about LGS, which includes data on therapy, help groups and an educational video series, &ldquoNavigating the Storm,&rdquo can also be found by visiting LivingWithLGS.com.