Living with LGS
LGS Lennox-Gastaut Syndrome, epilepsy, seizures
LGS Lennox-Gastaut Syndrome, epilepsy, seizures
LGS Lennox-Gastaut Syndrome, epilepsy, seizures
LGS Lennox-Gastaut Syndrome, bracelet, epilepsy, seizures
Managing Lennox-Gastaut Syndrome goes beyond seizures. Quality of life, education, caregiving, safety, and other major components of every day life need to be taken into account when your loved one is living with LGS. Learn more about some of these aspects here.
EDUCATION
Previously, children with Special Educational Needs were assessed by a number of professionals and a Statement of Educational Needs (SEN) was put together this is being replaced by Education, Health and Care (EHC) plans. This new process will be co-ordinated across education, health and care.
All children and young people who have a statement and would have continued to have a statement under the old system will be transferred to an EHC Plan. The proposed deadline for the transition is April 2018.
If your child does not have a Statement/EHC Plan but you feel that they may require one, you can request an EHC needs assessment from your local authority in England. As the new EHC plans take into consideration a child’s health and care as well as education there is a process which should be followed to ensure your child has reliable, useful and accurate plan which will not only serve to help your child but the school they attend.
The Children and Families Act 2014, Part 3 Children and Young People in England with Special Educational Needs or Disabilities details what can and cannot be done, who is responsible for what and the procedure for appeals. This also covers local authorities’ responsibilities to your child even if they do not currently have an EHC Plan. http://www.legislation.gov.uk/
QUALITY OF LIFE
Life for each child or young person living with LGS is different, as is the nature of LGS. The different forms of seizures experienced by sufferers means that each family is faced with their own set of challenges and this will influence the way they live their lives. So with that in mind each family will have a different idea of what is important to them and what makes living with LGS easier or harder.
In the UK, most families will be entitled to benefits to help ease the financial stress that can come with looking after a LGS patient, like adapting houses or providing equipment not available on the NHS. Those who spend time looking after a LGS sufferer may be entitled to Carers Allowance. If you are unsure about what your family may be entitled to please visit https://www.citizensadvice.org.uk/
Parents/carers of LGS suffers are sometimes unsure about what to do when your child becomes an adult; Should they stay at home or move into independent living? There is no right or wrong in staying at home or moving out, the decision is down each family and their circumstances. If you are looking at moving your child to independent living but are unsure, the following website can be of great help http://www.nhs.uk/Livewell/Disability/Pages/Independent.aspx
CAREGIVING
Being a parent of a healthy child can be stressful at times, so caring for a child may come with its own set of challenges that you as a parent will try and overcome. Some parents can experience a decrease in their own wellbeing whilst caring for a child with LGS, due to the stress. Perhaps nightly seizures mean that the caregiver is experiencing sleep deprivation, a carer may be anxious about their child having another seizure. For families with more than one child, looking after a child with LGS may also involve the sibling. Siblings may find the situation unfair and stressful as their sibling seems to get a lot of attention and doesn’t seem to ever get better. With this in mind, it becomes important to try and make time for the siblings and include them in activities. For example, LEGOLAND offers a queue jump for children with disabilities which allows the child and up to 3 others to jump the queue at rides. Also, many places designed for those with special needs will allow siblings to attend events; some will even run events especially for siblings of those with specials needs. However, the child with LGS will almost always come first as is the way when someone requires extra support.
SAFETY
Caring for a child with Lennox-Gastaut Syndrome is different for everyone, as each child with LGS has needs that are unique. Parents must become advocates and learn how to receive the best medical treatment and education for their child.
Taking the appropriate safety precautions can help prevent injuries from occurring during a seizure and can minimize the chances of seizure-related accidents.
Safety & Seizure-related accidents: This comprehensive powerpoint, presented by Dan Friedman, MD, of NYU Langone Epilepsy Center, outlines seizure safety and seizure risk. You may also download the LGS Foundation's seizure safety poster here or order small posters free of charge from our LGS materials page.
Safety Equipment: Equipment such as helmets, monitors and alerts are helpful in preventing injuries as well as detecting and alerting caregivers when a seizure occurs. A list of providers are listed here.
SUDEP & Mortality: Individuals with LGS are at a higher risk of SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP is defined as a sudden and unexpected non-traumatic or non-drowning-related death in a patient with epilepsy that may or may not be due to a recent seizure.1 Risk factors most consistently associated with SUDEP are: seizures that can’t be controlled, treatment with multiple anticonvulsant drugs, and having long standing chronic epilepsy. Other factors include generalized tonic-clonic seizures, nocturnal seizures, developmental delays, stopping the use of anticonvulsant medicine abruptly, and onset of epilepsy at a young age.2
Helpful Resources:
PAME (People Against Mortality in Epilepsy) Meeting Summary, 2014
Seizure Safety & Seizure Risk: From First Aid to SUDEP
LGS Foundation Bereavement Page
References:
1. Glauser TA, Morita DA. Lennox-Gastaut syndrome. eMedicine web site. Available at: http://www.emedicine.com/neuro/topic186.htm. Accessed November 7, 2003.
2. CURE Epilepsy Website. http://www.cureepilepsy.org/research/sudep-faq.asp. Accessed 3.1.15