Mother underscores importance of diagnosing ESES epilepsy early

 

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As originally seen on epilepsyontario.org

Jennifer Young says parents should be aware of the symptoms of Electrical Status Epilepticus during Sleep (ESES) epilepsy, a condition that appears in childhood and does not present itself through seizures but rather as learning difficulties and behavioural changes.

Jennifer’s son was diagnosed with ESES when he was seven years old and in Grade 2. It was a “very sudden change,” she says.

The first sign Jennifer says she noticed in her son was that he was suddenly having learning difficulties at school. He then began experiencing behaviours he had not previously had; he had done well in school his previous year. His clothes were also bothering him so much he had a difficult time getting out of his pyjamas in the morning, and he couldn’t wear gloves in winter because they bothered his hands.

She took her son to their family doctor. An MRI and an EEG were ordered. While the MRI didn’t show anything, the EEG showed some abnormalities, so Jennifer’s son was eventually referred to a neurologist at McMaster University Medical Centre, who ordered a sleep-deprived EEG test which shed more light on his condition.

What doctors discovered was that Jennifer’s son was having epileptiform discharges that were not causing visible seizures in his sleep.

“They had him on treatment right away,” Jennifer says.

Jennifer says her son’s symptoms seemed “psychological.” There was no visible indication her son had been having seizures, so she credits the family’s doctor for pushing for more testing. It was the doctor’s diligence, she says, that led to her son being diagnosed with ESES.

“If it wasn’t for her, I don’t know where we would be; she has done a lot for us on our whole medical journey,” Jennifer says.

Jennifer says some of the symptoms parents may notice in children with ESES epilepsy are sudden changes in behaviour; ADHD-like symptoms, including difficulty in school; language regression; and difficulty sleeping.

Because Jennifer’s son was diagnosed early, doctors were able to control the epileptic activity he was experiencing with medication. But if ESES epilepsy is not detected early, it can become more severe.

Now nine years old, Jennifer’s son is enjoying a better quality of life, Jennifer says, adding that he continues to be monitored by his neurologist. He plays baseball, spends time with other children and his schoolwork has improved.

“It’s day and night,” Jennifer says. “It was unbelievable to get our son back.”

As originally seen on epilepsyontario.org

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Triggers of Seizures

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As originally seen in www.epilepsy.com

Watch Michael Privitera MD talks about triggers of seizures. 

Some people may find that seizures occur in a pattern or are more likely to occur in certain situations. Sometimes these connections are just by chance, but other times it’s not. Keeping track of any factors that may precipitate a seizure (also called seizure triggers) can help you recognize when a seizure may be coming. You can then be prepared and learn how to lessen the chance that a seizure may occur at this time.

Some people will notice one or two triggers very easily, for example their seizures may occur only during sleep or when waking up. Other people may notice that some triggers bother them only when a lot is going on at once or it is during a ‘high risk’ time for them (for example when under a lot of stress or when sick).

What are some commonly reported triggers?

What is reflex epilepsy? Is this related to triggers?

Epilepsy triggers

Some people may notice that their seizures occur in response to very specific stimuli or situations, as if the seizure is a ‘reflex’. There is a type of epilepsy called ‘reflex epilepsy‘ – in this type, seizures occur consistently in relation to a specific trigger.

  • For example, one type of reflex epilepsy is photosensitive epilepsy where seizures are triggered specifically by flashing lights.
  • Other types of reflex epilepsies may be seizures triggered by the act of reading or by noises.
  • These reflex epilepsies are not common, but knowing if you have this form of epilepsy will help you learn how to manage them!

How can I tell if something is a trigger?

Great question and a common one too! Sometimes people think just because a situation happened once or twice, it’s a trigger to all their seizures. It’s important to realize that a trigger is something that occurs fairly consistently before seizures and more often than by chance. To identify triggers, try a few of these strategies:

  • Whenever you have a seizure, note what time of day it occurs, special situations surrounding it, or how you felt. Note if any of the commonly reported triggers were present.
  • Write these in your seizure diary. Do this consistently, for each seizure.
  • If you notice that a situation or event is happening pretty consistently before seizures, now you need to know if it also happens at other times.
    • For example, you note that you were sleep deprived before 2 out of 3 seizures in the past 3 months. But when you look at your sleep patterns, you didn’t have seizures all the other times you were sleep deprived. And you don’t sleep well most of the time. In this situation, sleep deprivation isn’t good for you, but probably doesn’t trigger seizures all by itself. You still need to work on improving your sleep, but there may be other things going on too.
    • Track a suspected trigger in your diary. Note whenever it happens and not just when you have a seizure. Then you can see how often it happens with seizures as compared to other times.
  • If you have a form of reflex epilepsy, talk to your doctor about the trigger. Knowing the type of epilepsy and trigger can help you build in ways to avoid the triggers whenever possible or find ways to lessen their effect on you.

As originally seen in www.epilepsy.com

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Living with Epilepsy: Juliet’s Story

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As originally seen in www.epilepsysociety.org.uk

My name is Juliet and I have epilepsy – waits for supportive round of applause from others in the help group… No? Oh, ok. In one of my guises as a stand-up comic, I explain to audiences that I have tonic clonic epilepsy, and that I affectionately refer to my seizures as ‘gin and tonic colonics’ because of how they make me feel afterwards… (there’s some artistic license here – actually I feel incredibly serene after a seizure). Now I’m certainly no expert on neurology or science, but I have lived with my epilepsy for more than half my life. I say ‘my’ epilepsy as what strikes me is how very personal epilepsy is. Not just in the nature, frequency and severity of seizures, nor even the experience of different medications. For me, the most personal aspect is the relationship with epilepsy itself.

I have the most common form of generalised epilepsy – idiopathic generalised tonic clonic seizures. The ‘idiopathic’, or ‘of unknown cause’ part has, for me, been the most frustrating thing to deal with. I had kidney failure as a child, is it connected to my adolescent-onset epilepsy? We don’t know. Is there any physiological cause? We don’t know. Might I grow out of having seizures? We don’t know. If I change my medication might I experience awful side effects? We don’t know. Hmmmm. Frustrating. My journey to understand my epilepsy has taken me through, in no particular order, denial, frustration, vulnerability, sadness, anger and sometimes even joy. Yes, joy. Without epilepsy I would not have the insight that I do into the kindness of strangers that I have so often depended on, the fine work of the ambulance service and hospital staff, the support and love from friends and family, the miracle and complexity of the human brain, the hard work of researchers to understand the brain, the mutual support from other people with epilepsy at meetings and in online chatrooms, and the dedication of individuals who run marathons, bake cakes, shave their heads and do parachute jumps to raise money for various epilepsy charities.

It is often said that the worst thing is not knowing and I would agree – it makes you powerless. Like many people, I have no prior warning if I am about to have a seizure, so only find out after the event (sometimes a long while after, depending on how many seizures I have had and if I was alone at the time). This can be really terrifying. The best solution I have come up with is to try and understand my epilepsy and resign myself that if I have to live with not knowing, I would rather live in a general state of positivity which may be interrupted by seizures, than a perpetual state of fearful paranoia. I choose to be as ok as possible with not knowing.

I have learned a respect for my body, which has healed itself so admirably after I have been injured during a seizure, and actually I have come to enjoy my cuts, scars, burns and grazes as they present a living testimony to my epilepsy. ‘The scar on my nose is from a seizure in the office… the piece of tarmac in my chin was accidentally left there after I was stitched up following a seizure in Tasmania… the burn on the back of my leg is from a hot water bottle I was unconsciously lying on after a seizure…’ etc.

I now work as a journalist, writer and stand-up comic and yes, I do talk about epilepsy on stage. The relationship between comedy and epilepsy is a complex and often contentious one. People’s individual relationship with their epilepsy affects how appropriate they feel it is to make jokes about it. I can only speak from my own experience and for me comedy is a crucial coping mechanism. Quite often I will be approached after a gig by a fellow act or audience member who tell me about their own experience of epilepsy. I find it a great opportunity to engage with people and de-bunk some long held myths. Sometimes it can be surprising how much ignorance is still out there, but thankfully I’ve not yet had a crowd of angry villagers cry out for the ducking stool.

It’s been some nine months since my last seizure (in a comedy club – definitely not part of my act!). I keep taking medication, ensuring I rest if I need to and making certain people in my life know what to do should I have a seizure. If I do have another seizure, well, I’ll just have to recover, reassess my meds with my neurologist and carry on. Life is precious and short – too precious and too short not to enjoy!

Juliet Stephens, 2013

As originally seen in www.epilepsysociety.org.uk

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Updated Recommendations for Ketogenic Dietary Therapy in Children Published!

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As originally seen in epilepsy.com

Updated Recommendations of the International Ketogenic Diet Study Group

Back in 2006, The Charlie Foundation along with several of us in the ketogenic diet community realized that we had enough solid information to create a guideline for doctors and dietitians using the ketogenic diet for epilepsy. This “consensus statement” was published in the journal Epilepsia in late 2008 and was the work of 26 international neurologists and dietitians. It was endorsed by the Child Neurology Society and Charlie Foundation and was one of the first big papers discussed here in Keto News!

10 Years of Research and Expertise Improves Dietary Therapy Guideline

Now one decade later, it was time to revise and update this important document.

Why?

  • We now have nearly 3,000 published articles on the ketogenic diet, the MCT (medium chain triglyceride) dietmodified Atkins diet (MAD), and low glycemic index treatment (LGIT) available. There has been a lot of new research in the past 10 years into diet initiation, medications with the diet, management, supplements, and how to stop the diet. Much of this research has been discussed here in Keto News over the past 10 years.
  • There are also many new doctors and dietitians in the field. Although we couldn’t include them all, we added 6 new authors to the new guideline. Most of the new authors are from outside the United States. Similar to 2008, we also surveyed the authors about how things have changed in ketogenic diet practice over the past decade.

This updated guideline was published online May 22, 2018, in the journal Epilepsia Open. It is free for anyone to download courtesy of a kind donation from the Carson Harris Foundation. It was endorsed again by The Charlie Foundation and Child Neurology Societyand this time by Matthew’s Friends as well.

Highlights of the New Guideline

Since it’s very long (!), here are some of the major highlights:

  • The list of “indications” for using ketogenic diet therapy was clarified (as those with at least a 70% responder rate) and now includes: Angelman syndrome, complex 1 mitochondrial disease, FIRES (febrile illness-related epilepsy syndrome), Ohtahara syndrome, super-refractory status epilepticusDravet syndromeDoose syndromeGlut-1 deficiency syndrome, formula-fed children, infantile spasms, pyruvate dehydrogenase deficiency, and tuberous sclerosis complex.
  • Lots more information and guidance based on new research specifically for Glut1 deficiency syndrome in included.
  • Flexibility is the norm now: Centers and patients can pick between all four major diets. (There is good evidence they all work!) Although we suggest the classic ketogenic diet for children under age 2 years and MAD or LGIT for teenagers over age 12.
  • Similarly, although most centers still admit for the diet (80%), 92% believed admissions were optional. Fasting is also viewed as optional, but 72% of the keto centers in this guideline no longer start the diet with a fast.
  • The only mandatory supplements remain vitamins, calcium, and Vitamin D. Many others were listed as optional.
  • Children should be seen back in 1 month after starting the diet if possible.
  • Recommendations for labs at follow-up did not change considerably from 2008, but now selenium levels, total carnitine, and an EEG (electroencephalogram) (when considering stopping the diet) are suggested.

This version of the consensus statement will hopefully be revised again in 2028 after 10 more years of research. We suspect there will be more research and information about supplements (including exogenous ketones), long-term side effects (including the need for DEXA (dual-energy x-ray absorptiometry) scans to check on bone health), and value of serum ketone monitoring. In addition, this guideline did NOT address non-epilepsy uses or using diets in adults.

References

As originally seen in epilepsy.com

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