Questions and Answers relating to Kleine Levin Syndrome

This is a list of questions that we have wanted to know the answer to since our son was diagnosed with Kleine Levin Syndrome. They are not in any particular order... just questions that we feel we would like to share with others....

Is Kleine Levin Syndrome a disability?

Yes. It is, but it really depends on how often the episodes are to whether or not it will be recognised by the Department of Health and Pensions in the UK. If it is recognised and it is done on a case by case bases then you may be entitled to Disability Living Allowance. It is well worth having a look - information can be found here.

If you are over 16, then you may be looking at a personal independence payment as this changed in April 2013, and depending what they are doing they might be entitled to support from ESA - Employment Support Allowance. Info here on Parent Voice and here in the Contact a Family Guide.

What about education?

What happens with education and college really depends on how often your episodes are. At secondary school - GCSE's, our school has offered us catch up time in a special area of school and Jake returns to class when he is ready but on a reduced timetable. Other options may include home schooling, tutoring, repeating a year, reducing subjects etc. The statutory guidance published in 2013 may be a useful resource to read. The current advice from Prof Arnulf is that they are best at home in episode. It is best to liaise with school and request a team meeting so that an education plan can be drawn up. Depending on how long/often your episodes are it may be worth requesting a statment of special needs - we have done this - it took 9 months, and we are the first statement case of KLS in the UK and are happy to advise others.

When it comes to GCSE exams in 2013 there was some special considerations that could be made, our MP has got involved and this is a copy of the reply from the Chief Executive of AQA, one of the exam boards - hopefully it will help. If you miss an exam then a GP’s note needs to be received in school within five days to make allowances.

For sixth form or further education ... Level 3 qualifications... it seems to be pretty hit or miss depending on the college, the level of communication you have with them and the number of episodes that you have / the amount of time you miss. There are always options and if sixth form does not work out, then online learning such as the courses run by the www.openstudycollege.com - might be an option to consider.

For university we have been advised that if you contact them when applying, and include details of KLS in the personal statements - then they may be more flexible with the entrance qualifications which is a great thing - but GCSE's are still needed in Maths and English (grade A-C). So hope for our future perhaps. We have also been told of DSA (disabled student allowance) which might offer some assistance and disabled student allowances for people on care related courses, this help may be in the form or en suite accommodation, a computer to help with study etc. Dan make it to uni, and his account of his first evening can br found on his blog - and is quite thought provoking....

In 2014, statements for educational needs ended and a new Education Health Care plan replaced this - and is valuable to children with special needs up to the age of 25. Information and guidance on this can be found here: special education needs and disability, a guide for parents and this useful guide on the 16-19 study programme.

On the 1st September 2014, a new statutory guide was published by the government - supporting students with medical conditions - this would be an ideal place to start looking for support for your family.

Is there hope for their education?

"Two and a half years ago, we were unsure if our son Matt would EVER be able to finish high school. He was a straight-A student until he was struck down by KLS. He missed about 80% of his freshman and sophomore years and as a result, his GPA was greatly affected. However, I am overjoyed to report that on Friday, he not only graduated high school (five years), but did so with honors. Ken and I couldn't be prouder of the determination, perseverance and courage it took for him to keep going when catching up seemed like a flat-out unattainable goal.
I write this post for two reasons: 1) for those who are in that horrible stage of the illness where things look absolutely hopeless, I wanted to let you know that there IS hope that someday, your child will be healthy and productive again. When we were going through that stage, not knowing if things would ever improve and the hopeless feeling was just so overwhelming. I needed to hear from others that it can improve. The second reason for writing is to propose that all our KLS kids be recognized at graduation with an honor cord for overcoming medical adversity. We selected to represent the characteristics. Red – Perseverance & determination, Yellow – Hope, and Blue – Wisdom. Let’s make this a standard!! Our kids have to work extra hard just to stay awake, let alone do tons of make-up work and meet standards without the benefit of good health. It not only honors your student, but it’s also a way to spread awareness". Shared by Gloria (in Washington, on facebook June 2015).

What about relationships with friends and family?

Keeping up with friends when in episode is difficult. It is not unusual to discover that some family (that's right family) and friends can not handle the condition, some won't believe you, and some will just think you are making it up. The best advice we can give is be honest with people, tell them what the condition is, how if affects you - suggest they read a leaflet, read a web site, look at some videos etc and help them to understand what it is like for you. If they know what it is, what to expect and how they can help - it will help them and you. You will loose friends, fall out with family - but it is not your fault... some people cant handle other people's problems but at the same time other people will surprise you with their kindness, thoughtfulness and understanding, new friendships may grow and you will have some amazing people supporting you.

How long can a patient sleep for safely?

After Jake slept 22 hours straight 9pm-7pm, we got concerned about how long he can sleep without needing to have a drink, eat or go to toilet. Our consultant suggested that 12 hours was fine - but after about 13 hours we should be trying to wake them just to get in a few sips of water - this may be with a straw and supporting their head or with a sports bottle. If we can't wake them at all, then depending on how much they have previously drank, and whether they have had a prolonged sleeping period before ... we may need to be concerned. If in doubt then ring up and ask for advice...

How will people know the patient is in episode and not drunk or on drugs?

We recommend that all patients wear medical id - indicating that they have Kleine Levin Syndrome and with their contact details - programming in ICE on their mobile phones too is a great idea too. That way if there is an emergency, the emergency services are trained to check for ID and they can perhaps get the help and support you need quicker. ID can be purchased from web sites like this one.

How do I find a doctor who recognises KLS?

In the UK, you need to get your doctor to refer you to a neurologist or sleep centre which recognises the condition. We would highly recommend that you get referred to the Southampton Sleep Centre to see Dr Cathie Hill - as we think she is the best consultant in the country - she has led sleep training about KLS in the UK and Australia. Alternatively the KLS Foundation have information about this on their web site.

Where do i get help without a diagnoses?

It is not unusually to go a number of years without a diagnoses due to the episodic nature and rarity of the condition - we have found that SWAN - Syndrome Without a Name, was very helpful... as it gave us lots of ideas for places to contact - they produce a great booklet here - which is filled with really useful advice, some aimed at younger children born with genetic conditions, but most of it really usable.

One of the best resources about special needs in general we have found is the "Special Needs jungle" - a parent run web site packed with useful resources.

How many people have KLS

A guy called Scott has done some research and has mapped some of the world's confirmed cases of KLS. He belives education is the key to awareness, and by plotting us all on a map - we may be able to reach out to families near us. He says "They say over 1,000 of us world-wide have KLS.....Where exactly did they get their information?" You may be added to the map with the following conditions: A. DIAGNOSED WITH KLS (shows as a "sunflower" on the actual map) = Please provide (all minimum requirements) your last name, city, state, country (of where you currently live) and your age at which you were diagnosed. B. UNDIAGNOSED WITH KLS (shows as a "candle" on the actual map) = Please provide (minimum requirements) your last name, city, state, country (of where you currently live). If you fail to list your diagnosed age then you will be represented with a "candle". Please follow the rules to make it easy for all of us. Checkout the map I created with ZeeMaps: http://bit.ly/170Us8T KLS World KLS World map - to get added to the map - contact Scott directly at Msoates@sbcglobal.net

Can I drive if I have Kleine Levin Syndrome?

Yes!!!! "You do have to tell the DVLA, I think they have an extra medical form that you can print and will need to fill out along with the usual forms on their website.
I would recommend sending them off several months before your birthday though... I don't know if you are able to tell when you are going into an episode but I get a "busy" feeling in my head so I know when I am about to fall asleep. If do you know when it's about to happen, you should put that on the form too as it will work in your favour & are more likely to be allowed to drive." Information from an Internet forum 2012

We were able to get a three year medical licence for Jake - it took a while, as they needed reports from our consultant/doctor ... and this was despite him have regular episodes, and he passed his test at 17years 4 months. (You can learn from your 17th birthday in the UK)

I want to ask you something?

If this web site has not answered your questions or you would like more information about anything to do with Kleine Levin Syndrome - KLS - then please email me ... and I will do my best to answer your question or recommend a place to look for more info - but please remember, I am just a parent - trying to make sense of Kleine Levin Syndrome too.

Am I the only one?

There are around 1000 people in the world with this disability and I totally recommend meeting up with another family with the condition of you get the opportunity as they truly understand what it is like to live with KLS and can offer you there support. Scott Oates, a fellow KLS parent started plotting a map of where the cases are to see if there was any patterns, and to see if people could locate their nearest support network - details of the map can be found here: KLS Global Map - if you want to be added, we can help you get in touch with Scott.

In 2011, the KLS Foundation enabled families in America to meet up, in 2012 - UK families met up at the International sleep conference, and in 2013 & 2014... please get in touch for more details.

How do I know my episodes may be nearly over?

I don't know for sure, as we haven't got there yet but I have been following some discussions on facebook for some people the episodes come on less strong than usual, they lack energy, are nowhere near their usual self, are able to get on with life but feel "out of it" - the days like that appear to get let frequent, and they are hoping they are reaching the end of KLS... maybe it is.... I'll keep you posted.