Lennox Gastaut Syndrome – Life Expectancy, Symptoms, Treatment

What is Lennox Gastaut Syndrome?

A seizure is considered to be a short period of bursting abnormal electrical activity in a person’s brain. When it recurs over and over, it is medically termed, epilepsy, which is a seizure disorder. The severe form of epilepsy is recognized as Lennox-Gastaut syndrome. It usually starts before a child turns 4-years-old. It’s characteristics are multiple types of epileptic seizures.

Lennox Gastaut Syndrome Pics

Lennox Gastaut Syndrome

Lennox Gastaut Syndrome Symptoms and Signs

The patients diagnosed with Lennox Gastaut syndrome will experience the following signs and symptoms:

Multiple seizure types

Seizures that are experienced may vary between the following:

Atonic seizures

Considered as the “drop attack”  seizure. During this kind of seizure, the child suddenly falls to the ground, which may be mistaken as poor balance or tripping up. It usually happens many times in a day.

Absences seizures

An atypical seizure that last from 10 seconds to several minutes. The child usually stares blankly, appears vacant, and manifests rapid blinking or head nodding.

Status epilepticus

It can be either convulsive or non convulsive type of epilepticus. It can be a life-threatening seizure, lasting for about 30 minutes or longer with a series of seizures.  The person does not regain consciousness in between each seizure.

Tonic seizures

Another common seizure is a tonic seizure. It occurs when the child is asleep at night. It disturbs their sleep but doesn’t wake the child. These seizures also go undetected because of their brevity.

Tonic clonic seizures

The combination of tonic and clonic seizure. In the tonic phase, the child’s body goes stiff, while in the clonic phase, the seizure begins.

Complex partial seizures

A form of a partial seizure. It is when the child loses awareness of the seizure activity. He or she may perform actions such as walking, riding a bike, or talking and may have physical, thought, and sensory disturbances.

Myoclonic seizures

Is a seizure that has a jerking (Myoclonic) characteristic of the muscles without the loss of consciousness.

  1. Cognitive impairment, which is usually a delay in the development of the cognitive aspect and is seen over time.

Lennox Gastaut Syndrome Causes & Risk Factors

70% of children who have the diagnosis of Lennox-Gastaut syndrome are symptomatic and the remaining 30% are cryptogenic or have no underlying etiology. Some of the children reported to have one of the types, have a family background of epilepsy. However, such a syndrome doesn’t have direct evidence that it can be inherited. Those who have symptomatic Lennox –Gastaut syndrome have the following possible causative factors:

  1. Brain malformations like cortical dysplasia or tuberous sclerosis
  2. CNS or central nervous system infection
  3. Metabolic or degenerative nervous system disorders
  4. Brain injury before, during, or upon birth

Lennox Gastaut Syndrome Diagnosis

In diagnosing the Lennox Gastaut Syndrome, the physician performs the following actions and confirmative diagnostic exams:

  1. Medical History pertaining to previous seizure or family history of seizure episodes
  2. Physical Assessment, such as injury that has been caused by a seizure
  3. Neurological examination is also assessed to determine if the neurological aspect is already affected.
  4. EEG or Electroencephalography, which records the brain’s electrical activity. It is an important diagnostic exam that shows either normal or abnormal patterns of brain activity. For patients positive with this syndrome, it will appear on the monitor as continuous spike waves whenever a person is in a slow sleep state and it also shows fast rhythms in a diffuse slow background.
  5. Other testing, such as urine tests or blood specimens, or an test on cerebrospinal fluid through lumbar puncture, may be done when children have no apparent causative factor that causes the seizure. This is done to detect any underlying genetic or metabolic cause.

Lennox Gastaut Syndrome Treatment

With regards to the treatment of Lennox Gastaut Syndrome, the following treatment therapies are usually prescribed:

  1. Pharmacological medications such as iamotrigine, ethosuximide, sodium valproate, clobazam and phenytoin. Such medication will not cure the disease, but will only manage the seizures.
  2. Ketogenic diet, which is a low carbohydrate and special high fat diet.  A nutritionist and physicians will prescribe to help in seizure management. It increases the ketones in the body, a popular diet for the epileptic persons.
  3. Surgical Procedure such as vagus nerve stimulation and corpus callosotomy may be considered.

Lennox Gastaut Syndrome Prognosis

The prognosis for patients with Lennox Gastaut Syndrome differs from one person to another. Since there is no specific treatment for this kind of syndrome, the seizure will continue throughout life.

The long term prognosis of a person with this syndrome with regards to intellectual development and seizure control is poor. Their IQ will deteriorate as time goes by and will need assistance from other people as they get older.

They will also have behavioral problems brought about by the antiepileptic drug’s side effects, seizures, and brain dysfunction. Some children will outgrow seizures upon their teenage years, while others will still continue to experience seizure episodes until they reach adulthood. If this occurs, they will be dependent on others. Still, some will develop infections, which will lead to a shorter life expectancy and will lead to an even poorer prognosis.

Lennox Gastaut Syndrome Complications

The complications associated with this kind of syndrome include:

  1. Injuries from seizure
  2. Renal, cardiac, or metabolic complications resulting from the Ketogenic diet
  3. Disconnection syndrome resulting from corpus callosotomy surgical procedure
  4. Language disorders brought about by the corpus callosotomy procedure
  5. Motor dysfunction as a result of the corpus callosotomy procedure
  6. Neurophysical impairment associated with the corpus callosotomy procedure
  7. Mental retardation as time progresses
  8. Death

Lennox Gastaut Syndrome Prevention

The only preventive action is to prevent epilepic seizures from occurring, specifically the ones that are known to occur with Lennox Gastaut syndrome. You can only prevent seizures from occurring by taking the prescribed medications mentioned above and following a Ketogenic diet or perhaps undergoing a surgical procedure, such as one of the ones mentioned above.

Proofreaded for grammar on 25/10/2015.

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29 thoughts on “Lennox Gastaut Syndrome – Life Expectancy, Symptoms, Treatment

  • 02/02/2013 at 10:08 PM

    i need info on LGS for my sons teachers at school if you know how i can get info through the mail please let me know and GOD BLESS

  • 07/04/2014 at 11:55 PM

    I began volunteering with a young man with LGS. He was 16 years old at that time. He turned 32 years old this past November. For those of you that have young children and would like someone to ask questions, please feel to email me. I will be glad to share my experiences with you.

    • 06/07/2014 at 8:54 PM

      Hi I’ve had the pleasure of providing medical care in a school setting for four years for a young man with LGS. I’m always looking for ways to stimulate his environment with creative ideas especially at school since I manage his course schedule as well. I would love any ideas or experiences.

      Thank you,
      Peggy Chandler

    • 06/02/2015 at 12:58 AM

      I have a 13 year old daughter we believe to have LGS, also seeing neurologist tomorrow to diagnosis of LGS. Since being diagnosed with epilepsy in 2007 we have been unable to control clusters of seizures also new seizure development. She has always had every symptom of LGS. Would love to talk with you. Thanks Jody

    • 04/06/2016 at 6:31 PM

      My son is also 32, and has detiorated a lot over the last year, despite meds changes. Neurologist said it’s detioration of his brain, as he gets older, and doesn’t think he’ll get back to his good periods. I’m devastated, as when he had these, he had good quality of life, sometimes, now he doesn’t. Chris. Xx

    • 13/11/2016 at 7:19 PM

      Hello my name is Douglas, and I was very impressed with what you shared and wanted to thank you for sharing your experience. My nephew is 9 and has been diagnosed with LGS since he was 2. I was with him when he had his first two major seizures. If it is possible I would like for you to meet my nephew and his parents. I’m not a very active participant in my nephew’s life but I am very concerned about his development and behavior. We reside in Los Angeles if a meeting would be possible. Again thank you for sharing your experience and if it is not too much trouble I will extend my email for a reply. driveclean.llc@gmail.com thank you

  • 07/06/2014 at 9:16 AM

    Hi my name is Amanda and I have a 3 yr old son that got diagnosed with lgs. I’m getting no answers and he’s been on the vent for two months now I don’t understand what’s going on. I know its not food but nobody is listening to me!!! Please contact me aspencer0720@gmail.com or 512-876-4279 text or,call

    • 06/07/2014 at 5:14 AM

      I sent you an email a few minutes ago and I’m posting this here so if you would like to write to me you can.

      • 17/08/2014 at 4:27 AM

        Does an atlas adjustment from an atlas orthogonal dr have any benefit to this awful disease?

  • 12/08/2014 at 6:29 AM

    Hy mi name is cecy from mexico df and ay have a son that haves sindrome de lenox and atrofia cortcal fronto temporal severa, he cant see and dosents speks and walks and talks and he hasent have a seizure since a month and thas a miracle y have beeng givin him the juice of noni its a fruit if you have more information or ai need help for mi son we live in very poor situacion thak you if you reed this the name of mi son is daniel hi is 3yers.

    • 19/02/2016 at 10:28 AM

      Hi, my name is Kelly and I had a son named Jonathan. My son that had encephalitis infection when he was 2 years old that left him severely brain damaged in his frontal , parietal and temporal lobes. Subsequently, he developed LGS over the years and his seizures got worse and worse. I tried every thing that could possibly be imagined to help him including brain surgery and multiple medications. My beautiful son died last year because someone I had watching him as he was severely mentally retarded forgot to give his seizure medications. The number one cause of death in people with seizures and LGS is forgetting to give medication or being under treated with medication. While I know that certain diets can help my son was not supposed to live for as long as he did despite all our efforts. He was 30 when he died. I guess what I’m trying to say is that the ketogenic diet helps but if your child truly has LGS you will not be able to control it without medications forever. It’s critical that you give medications on time in the correct dosages without ever missing a dose. LGS is a life-threatening form of epilepsy and should be taken very seriously. By the way my son died at UCLA Medical Center which is in the top three hospitals in the entire United States of America where he received the best care anyone could ever receive and they still could not save his Life. When this rotten person that I trusted to carefor him chose to not give him his medication and more importantly, chose to NOT call an ambulance when he began seizing, she took his life. Please don’t believe Noni juice is enough. Please. It’s not.

      • 15/06/2016 at 10:11 PM

        Hi Kelly, my name is Jenny I am really sorry about the loss of your son I can’t say I understand how you feel or what you are going through but in my heart I know you went all the “extra miles” to help so take comfort in knowing that My 12 year old son Jude was diagnosed earlier this year with Juvenile myoclonic epilepsy but checking the information on LGS is leading me in that direction, but we have to get an EEG done. We live in a country where its not available.

    • 19/02/2016 at 10:43 AM

      Cecilia me puedes dar tu correo por favor. Mi hermanito puede tener LgS tambien

  • 23/08/2014 at 5:21 AM

    My son is turning 17 and he was diagnosed as an infant.I don’t recall any of his doctors mention the diagnosis of LGS until a few years ago.

  • 01/12/2014 at 12:48 AM

    I am the mother of a son who had lgs. he developed this at 2 years old it was the most heartbreaking time of our life,but ada was a happy little boy who loved spongebob and life, he was very mischeivious and had so many people that loved him, I fought the school system and tried to educate the people around him about the disease,onw morning when I went in to wake himup he had passed away he was 9 years old.we miss him so much and as a tribute to him I donated his eyes and heart stem to another child I would be interested in talking to anyone who has gone through this thankyou

    • 23/11/2015 at 4:11 PM

      Hello. So sorry for your loss. My Anthony 19. I just read your post. I’m trying to find the best information to give my family. They , after 19 years are finally trying to understand. And that’s just because the challenges we face are placed in front if them for the last 3 weeks. They didn’t listen and tried to deal with my son as a regular person. He has LGS, autism, bi polar, add/adhd, odd, hashimotos, fibromyalgia, has had a heart attack, and his liver functions are beginning to get off more and more. I simply want them my family to educate themselves on LGS and autism. That would at least allow them to communicate with him without him having a meltdown. Any avenue of support you may have that I haven’t exhausted would be great. Facebook – Katricia Salinas. Email katriciadelrio@gmail.com

  • 07/01/2015 at 7:54 PM

    My son is 39 yrs old. His seizures began at 9 months old. We heard LGS at 12 yrs old when he was at Blue Ridge Hospital for consultation with Fritz Driefuss… Then we heard nothing again until the last few years.. Jason is a beautiful soul. He tries hard but has become a shell of who he was. He lives with me. I have built my life around him.. bringing my buisness in and having respite help when I work. I have always kept Jason as active as I can.. enrolled in special needs activities from Special Olympics while he could do it… to Acting and Glee club.. I think the more involved you keep your people the better for everyone. He loves his activities and his home.. we also have a wonderful companion dog that loves to sit with him.

  • 12/04/2015 at 2:22 PM

    My son was diagnosed with this condition @ 3 years old he is now 31 years old and is a father of 2 children. BUT I have to say he is in delusion most of the time due to his brain injury or before doctors do not know when I was pregnant with him I had no complication’s so therefore we have NO clue why he has this disorder

  • 04/06/2015 at 7:52 PM

    Hi I am an 18 year old son who was diagnosed with Lennox Gastout at the age of 3 years old. We have come some far over the course of the years. He was immobilized for the 1st couple of years when all this started at age 3, now he can do almost anything and remarkably we are going through a period where is has not had a seizure in almost 1 year. The doctors are talking about starting to take down some of his medications and this scares me to death. If anyone has experienced this with their child would love to hear from you.

  • 04/08/2015 at 3:32 AM

    I have a son who was diagnosed With crypto Lennox Gastaut and also has Encephalopathy, he takes many medications for seizures
    Even has the laughing ones, atonic, and convulsive. Do you mothers out there have problem with your kids sleeping see many seizures as he sleeps. I’m not getting the answers I need the levels of meds are not checked periodically like they need to be done.. He is six now very agressive behavior as well. Any awnsers to understand this more I see him slipping away not eating or drinking on his own anymore..thanks Sherry

    • 27/08/2015 at 11:32 PM

      My Son has Lennox Gastaut Syndrome experiencing every type of seizure. He can stay awak 72 hours or more without even closing his eyes. Had to have a mickey button (feeding tube put in his tummy) some years back so we could put liquid down his tummy tube when he wouldn’t drink. We have found that the aggressiveness he used to display was a form of communication for our son, he would only get aggressive when he wanted something and you couldn’t understand what he wanted, now that we use the show me method his aggressiveness has ceased. Your son may also be hungry all the time, so it’s best to keep Apple sauce, home whipped cream from heavy whipping cream and other fruits on hand you can cut up and make him snacks,. We also use the sugar free jello, not the pudding but the actual jello and use this as a snack with whipped cream. We have his doctor send the order in every 6 months to have his blood work done to make sure the meds are not causing other damage. After putting him on the actual ketogenic diet, being patient and learning to understand his wants and needs, we actually live a pretty normal life, other than never knowing when a seizure will occur or what type. If you want more info or just to talk, contact me, my name is John and my son’s name is John and he is 17 years old now..

    • 05/12/2015 at 7:41 AM

      I would request to have his labs drawn, Ammonia level drawn, and request a 6 hour EEG, Video taped. He needs a CBC, CMP, Ammonia and levels

  • 16/02/2016 at 10:19 PM

    I have a daughter that has had seizures since she was and infant they have gone from better to worse and back and forth. She is 41 yes old and has been in ICU now for five days due to her seizures not being controlled. She has LGS which is the first time I heard of this. I’m at the end of my rope send prayers her way thank you.

  • 05/10/2016 at 2:31 AM

    My little sister just turned 4 and her seizures started when she was 2. she does not walk very well and she has never talked. Just today she got unofficially diagnosed with LSG, and I am trying to have a better understanding of the condition. Just over the past 4 months she has rapidly deteriorated, she is now in the hospital and they are putting a feeding tube in today due to the fact that she wont eat. I guess my question(s) has anyone gone through the same thing? Also what is the life expectancy? It is all very sad but I don’t want to be blind sided by anything.

  • 29/10/2016 at 9:14 PM

    Hi everyone. I am Joy and I was diagnosed with LGS about six years ago. My seizures apparently occur when I am asleep which is why I never knew before this time. I now know the symptoms to look for the morning after an attack. I am 69 years old now. Is there any other adult with a similar case. I would like to know if this syndrome could have started when I was a child, but in a different way ? x Joy x

  • 28/11/2016 at 4:38 PM

    Hi Amanda , we are from Sydney Australia. My 2 and a half year old niece has severe epilepsy . Not yet diagnosed properly. May be LGS or West . Need help , has been in hospital for a year and a half .



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