How to sum up KLS in a couple of words - that is impossible ..
" Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world. The disorder strikes adolescents primarily but can occur in younger children and adults. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), sometimes waking only to eat or go to the bathroom. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. In between episodes, those with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome." KLS Foundation
My son began to sleep more in August 2011. He was 13 years old and we were on holiday, at first we thought he banged his head and had concussion, but he was not right for a long time afterwards. The Autumn was a long difficult battle trying to find out what was wrong. He was in episode for nearly 4 months. In December he was diagnosed with Kleine Levin Syndrome (KLS) he was still in this episode - he came out of it just before Christmas 2011, he had no memory of anything since the summer.
This is our journey - I have updated this page as time has gone on with information on getting help in school, exams, driving, Jake's doctor's, fundraising and more.... as well as creating other pages within the site of useful resources... please read our story, if you have KLS please get in touch and if we can help in anyway or answer any questions we would love to try...
Those first four months saw us fighting an unknown battle, our son was sleeping excessively, always exhausted and operating in a dream... he was unable to do some things but had an incredible memory - it was like he was overloading his mind with data. Some people were suggesting he was just a lazy teenager but it was so much more. We saw our GP, a neurologist, psychiatrist, visited a private clinic in Harley Street, had various tests and were being passed from pillar to post with our "interesting case" that no one recognises and we were getting more and more desperate as parents. He was finally diagnosed by letter - we had wrote a detailed letter about his condition - all the signs and symptoms the doctors were just not getting it, and this letter landed on a desk of a fantastic paediatrician who read it, and recognised the symptoms from a conference she had attended a month earlier - what we described was not in the text book, but was KLS - a week later we saw her, had a provisional diagnoses and shortly after that our first episode ended... our son was surprised to realise it was Christmas, he no longer had a bunk bed and we celebrated together and then he went into his second episode before New Year - practically confirming the episodic nature of the condition.
In January we had cognitive testing done - a Neuro Pschology assessment. He did the first episode when he was "normal" and then I managed to get him reviewed again 7 and 8 days later whilst in episode. I remember sitting in through the in episode assessments, knowing my son could not answer those questions, and then to go back and collect a 19 page report on him, and to be told they don't know what our next steps are. A statement from the report explains:
"The WISC-IV demonstrated a drastic reduction in Jacob’s intellectual functioning when he was in an episode as compared to when he was not in an episode. Jacob’s average range performance when in episode declined to a performance in the Extremely Low range. When Jacob is functioning at this level, his ability to understand or learn new verbal or visually based information will be extremely limited. He is not able to hold information in his mind while he makes use of it and his pace of work is extremely slow."
I have started this page a year after KLS started - it is August 2012. I wanted there to be more information about KLS available to the public, and more support to other parents like myself to be available. My son has an extreme case of Kleine Levin Syndrome - he has had 15 episodes in his first year, they have varied in length from half a day to 4 months. He has missed 180.5 days, 12.5 days have been "foggy" and he has had 171 good days where life has gone on. He is in year 9 at school - is on a revised timetable and despite only spending 78 days in school (most of them half days) he has actually caught up with his main subjects.
The chart below shows my son's first year. We found showing his Kleine Levin Syndrome episodes in this form was really helpful to us and Jake's doctors - Red is a KLS episode, orange we are not sure (we now know this as extreme tiredness, with us but not quite) and we usually keep him off regular activities and school, and green is "normal". It is based on traffic lights - red - Jake's live is on hold, we are waiting... and green we are busy living life and making the most of it. If you want to make your own chart you can download the KLS Chart file here (opens in excel 2007 or higher)
November 2012 - We are through the first year and Jake's episodes are getting more frequent again - some KLS families (we have got in touch with some through KLS Support UK) appear to have a time of year that is worse than the rest of the year.... we are in year 10 - GCSE's and so far have only been at school 15 days prior to half term, we are worried about the future as we have heard some Kleine Levin syndrome patients fail their GCSE's and there is no option to retake so we are starting early.... this is what we have discussed so far to see if it will help.
Mid November 2012 - we have started taking Iron and Vitamin D supplements in addition to our multi vitamins, in the hope that this improves this. Some KLS parents are currently trying this although there is no medical proof it helps - yet! Initial results are positive - we had three days of orange, with no memory loss just a very exhausted. Jake, when well appears brighter than he has been for a long time.
December 2012 - went to a meeting at the International Pediatric Sleep Association (IPSA 2012) Congress - an amazing day, organised partly by Cathie Hill, our consultant and KLS Support UK. We met so many people with KLS and heard from the two leading world experts - my notes and the memories that I will take away with me, can be found here. The whole family went - we got up at 4am and made it to bed by midnight, we were all made so welcome and learnt so much - Jake was with us... the longest time since August and awake the next morning at 7.30am for breakfast, and his siblings were amazing - they talked to other families and were very open about KLS. I am so proud of everyone. I urge anyone who gets the opportunity to meet just one family to do it.
January 2013 - we missed half of our 15th birthday, and have now had 33 episodes - the last one lasted 7 days, and in a foggy state Jake took his 2nd GCSE exam... it will be interesting to see how the results are.
During his 33rd episode - it snowed, Jake was excited by this and we recorded his reaction - 36 hours later he was normal and enjoying the snow again for the first time in 2013... the contrast between the two was amazing... and was evident in the film that I recorded and in the photographs I took over the two day. I made this short film to show some of the behavior changes of Kleine Levin Syndrome, from a real patient - my son. This does not show all the behavior in a KLS episode - but it does show the episode in a way that our son is happy to share.
February 2013 - Jake is almost having no gap between episodes, the last time we spent a week with him "normal" was before Christmas, the last time we had two normal weeks was July 2012. That hurts. Each episode is different - I can't explain that enough - this time he is cognitively with us, although vacant ... and he is sleeping 22 hours out of 24 at least.... going from 9pm to 7pm the following day, without waking for drink, food or to use the toilet, it is worrying! Doctors say that more than 13 hours without fluids is not a good idea, so we are trying to get water in him, even when asleep!!!
Episode 37, in the 20 months since Jake first started KLS - our second longest episode - he has missed all of February 2013, and came back to us on March 8th in time for mother's day - a 36 day episode. Other good news to start March with is that our Kleine Levin Syndrome Web site has now featured on the BBC - so we are getting the word out there that this condition exists and we are delighted that our friends Lois and Setta shared their story and showed KLS how it really is. Articles on the news page
We also had the news we didn't want this month from school regarding Jake's exams and we now know:
So moving forward we now know that if he is in episode for his exam only subjects (Maths and Science) he wont pass them or get credit for the work he has done. In English Language, it is 60% coursework so we stand a chance but school can not tell us when this needs to be done by, Design and Technology is 60% practical and he is a long way behind and is absences and impacting on this already... so we need to find out if it is worth continuing... Geography (1/3 of the way into year 10) and staff feel his absence impact his knowledge of the curriculum and he has not done sufficient work, Applied business he already has an extension for this year, but if he does not complete his assessment by May he has to restudy it and start again, there is still the exam to get through and ICT is 60% controlled assessment - so a judgment could be made for this one subject ... (A year on and he is no longer studying D&T, Geography, Applied Business - he has missed too much and school do not have the ability to catch him up).
Our question now still is - who can help us ensure that the time in school is spent doing the assessments he needs to do, who can ensure he covers the whole curriculum he needs to pass the exams (every exam board is different) and are there any options or alternative paths we can put in place to ensure he does not face the end of year 11 with nothing to show for his secondary education not because he has not worked hard, but because another episode comes along and he misses the exams... since posting this we have discovered a family in the UK getting 1:1 tuition to catch up - we are getting nothing and Jake is pretty much being left to his own devices, so this is something we need to tap into.
The hardest thing is the lack of understanding and support.... caring for Jake in episode is like living and caring for someone who has a brain injury, but worse - in the case of a brain injury you know their future is limited you can make plans for the best care package, support and you discover your day to day existence.... But for us, at any moment he could be normal again, be a normal 15 year old who needs a future where he can get qualifications and a job, where has friends have moved on without it and he lives knowing that "normal" may only last a day until he is gone again.... the people in our lives (extended family, friends, school, college etc) need to understand that Jake in episode can not care for himself, dress himself, does not know where he lives and that his handwriting looks like this - he wrote this in a mother's day card for his Granny.... I hate standing by and watching Jake's time slip away, and having to fight for the right for recognition....
KLS is not just the condition that Jake lives with, it is a condition that affects whole families and this is what Jake's sister wrote on facebook in May 2013 - a week before her 14th birthday when her brother was in episode again.
"I have recently been posting a lot about KLS, a illness which my brother sufferers from, and i have had many messages and people ask "What is KLS" so here goes:
KLS is shortened for Kleine Levin Syndrome, which is a very rare neurological disorder characterized by recurring periods of excessive amounts of sleeping and eating.
We were on holiday at the time when my brother started sleeping more, these where signs of KLS, however at the time we had no clue that this was a condition at all. We had many appointments with Hospitals and Private clinics just to get a diagnosis. The Autumn was a long difficult battle trying to find out what was wrong. He was in episode for nearly 4 months, 118 days .It was one of the worst and most worrying times of my life, and the longest 118 days of my life. In December 2011 he was diagnosed with KLS. My brother was still in this episode - he came out of it just before Christmas 2011, he had no memory of anything since the summer. Those 4 months must have been the hardest four months of my life, He was sleeping excessively, always tired and acting in a dreamlike state. Some specialists were telling us it was a normal teenager but it was much more. We had many appointments and tests but we didn't get an answer. In till we got diagnosed by a paediatrician, in December, Who had recognized many symptoms from a conference, she had been to before.
During this period of his 1st episode, I lost confidence. Because not only my brother was ill, rumors where spreading about his condition. And people where asking me what had happened, and telling me some horrible rumors. But none of this was true. Since the diagnosis, meeting others and being able to tell people and having emotional support my confidence has rebuilt its self.
Since our diagnosis we have had 40+ episodes, lasting between 1 day to 118 days. We never know when Jake is going to have an episode or how long they will last however we hope each one is Jake's last. "
Episode 42 - we have lost Jake for another week, as well as some shorter episodes in-between - he has only be with us 29 days since New Year and it is now the middle of April. It is so unfair. We are coming to the end of the Easter holidays and we have missed most of it :( We did though take Jake to meet another family with KLS - Lois is 14 and is having lots of episodes at the moment just like Jake and it was great for them to meet up and feel normal. We also met up with Beth, 15, who had not had a bad episode since November just a few tired days. I just hope he remembers the visit as he has been in episode since.
We finding the world of KLS confusing... there defiantly seems to be a huge variety of cases - I have spoken on line in the last week to a young lady (26) who was knocked out for a week with KLS after not having an episode for 6 years, I have chatted with two families in Norway (where I believe there are 4 cases of KLS), chatted to a Dad whose son was having frequent episodes a year ago who just had an 11 month gap and then another episode. I have realised that very few patients are having episodes as frequently as Jake and the severity of the cases and the treatment that works varies greatly across the world. We are still drug free - and are considering trying Sodium Valproate to see if that helps - although we have hit a stumbling block there as we have not found anyone yet who will prescribe and monitor! (Update November 2013 - still not tried the drug)
May 2013 and we have been on quite a roller coaster, Jake has been with us just over 2 weeks - the longest for ages... and we are not sure but could the stress of not being given work at school be causing the back to back episodes.... we have had some huge changes. We applied to get Jake Statemented as we felt school were not meeting his needs at the end of last term and also referred ourselves for support from Education Welfare. The Local Education Authority has turned down the request but has helped us push things forward and inspired us to really fight for Jake's education, and as a result of this we have had meetings with our MP, the LEA and our school and some support from a lady called Sue at parent partnership and have spent hours on the phone.
The result of this is:
June 2013 - and we now trying to see what happens if we reduce Gluten from Jake's diet, we had some allergy testing done and Jake may have a mild gluten intolerance - so we are experimenting - since starting the trial Jake has had a one day almost episode when he was with us but describes everything as being out of perspective - so we are waiting to see what happens. We have now had 50 episodes - it seems endless, but Jake sat his final GCSE science exam and he completed his GCSE Maths exam a year early - we wait the results... one of the exams had to be sat in the afternoon, because he was in episode in the morning - so we are delighted we fought for special measures for exams.
We have also heard from the LEA regarding statementing and they are going to relook at the case without is having to go for appeal - which is great news and we have to submit our report, yet at the same time we have learnt that the Inclusion Service and the school have not been communicating and we have not been working on the right things with the tutor as she did not have the right information. Hopefully this is now resolved with the Inclusion service taking over English but we are beginning to realise that school are not as positive as we hoped...
Episode 51 was different - Sunday Jake was exhausted all day but with us enough to read a book, and to visit the beach but not up to much more, Monday couldn't be woken, exhausted when he woke at noon he did tutoring, but went to bed early, Tuesday again did not wake up, this time quieter and cognitively with us but very accurate and precise with his conversation - slept loads and so it continued till Friday morning, when he woke and thought it was Tuesday.... so two days he was with us but tired, and three days not with us.... just recording this style episode for now....
We also now have had the report back from the Education psychologist - she has met us because of our request for statementing, she met Jake at school out of episode although did not really appreciate his sense of humour, apparently Jacob answer the question "When I was young, I ... " with "was not as old as I am now, and "my favorite time of day is..." to which Jake replied "7.30!". She chatted to us too with a member of staff from school present - she did not see Jake in episode - but she did see the video clip of Jake unwell as we shared it with her. Hopefully the report will help - she seems to have summed up things quite well - it is just a shame we have waited nearly two years for this to happen. If you are interested you can read the Education Pyschologist's report about KLS here, included in it are the details are the fact that Jacob has missed 70% of year 9 and 66% of year 10. It is so important to collect as much evidence about the condition as possible.
Episode 52 - was just six hours long, with hazy and very sleepy behavior and Jacob remembers it although it is not that clear, a short episode though meant that he made it to school for his very last day of year 10 where he was aware the Priestlands School "Best Endeavour" Trophy. The sound bite you can hear on the clip below is his head teacher talking to all the students and teachers in years 7, 8, 9 and 10 - there was around 1000 students present.
It is now two years since KLS joined our family, and two very different years - Year one, our longest episode was 118 days and our longest gap was 33.5 days. In the year we had 14 episodes to cope with, and Jake was in episode for over 180 days in total. Year two - our longest episode was 36 days - Jake lost all of February (whereas in year one he lost the Autumn term, pretty much), and our longest gap between episodes was 20 days. We have had 40 episodes to cope with and Jake was in episode for 140 days in total. (We have had 54 episodes in total!)
We have learnt that there isn't a pattern or a cause, Jake has learnt to recognise when he is feeling tired and goes to bed early, takes Melatonin and stays closer to home when he is not feeling 100%. A cold or virus does not trigger an episode for us, he has unwell a couple of times this year without an episode, and neither does his hay fever. He has also had an injection at the dentist and was fine... We are now trying a gluten free diet to see if it helps, we are not on any regular medication. We have also learnt that Jake gets a tiny warning (he feels different) just before an episode so is able to get himself to a point of safety, or more commonly struggles to wake up that morning..
In the last year we have also seen the episodes change - Jake is not as cognitively impaired in episode than he was, it is like he is growing up in episode too - and in some of the most recent episodes he has some memory recall and overwhelming feeling of tiredness while he has been cognitively with us. He has come out of episode in the bath, gone into episode whilst out with us, spent a day out with the family acting a bit odd, but the next morning having no recall of that day happening at all (we weren't sure at the time) and he has spent his own money in episode on things he did not want... which means he shopped independently whilst in episode! With these changes we not sure ever whether he is tired teenager or heading for an episode - we have just learnt to trust in each other and to trust our instinct... normally it is an episode.
School is an ongoing battle - we return to year 11, his GCSE year, in September and he is having lessons in school for science and IT only, tuition at home in Maths and English - his options are limited as he has to catch up so many days and the education system still don't really understand - we are trying to get Jake statemented so they can provide more help but meanwhile when he is well he has only access to twelve hours of education a week which will lead to qualifications (pre KLS or normal year 11's have access to 25 hours! A legal requirement!) He is well and able enough to access the other 13 hours - they just don't have the facilities to catch Jake up and support him through, which is disappointing, and it appears everything they offered in year 10 for catch up with 1:1 with a science teacher, and works with life skills is not continuing unless he falls behind - Jake is already behind before he starts due to his condition - grrr!
At home, Jake's siblings are amazing - they have grown up and are able to take more responsibility, they know that some days they need to be home and accept that, and they are learning to adapt - they know sometimes it is not worth triggering a normal sibling argument cause the consequences could last days.... they are great carers, really understanding and more mature for their age, they are an essential part of the team that care for Jake when he is unwell.
Extended family and friends, in the last two years we have definatley learnt more about these people than we could have imagined... everyone's different and very few people offer true friendship and support - just cause they are related to you, or you have been there for them does not mean that they are there for you. It has been a tough year - but we are wiser and more knowledgeable than we were and we appreciate all of those whom have stood by us... and finally Jake - he is amazing.... "Best Endeavour" trophy, listens to his body and goes to bed early, reads food labels to make decisions about his diet, adapts to missing time, happy to read and comment on emails about his education, talks to his parents and works with us as a team - at the same time is a normal teenager going out with his friends, playing computer games, trying to work when he can and who arranges short term plans so not to be disappointed to himself or his friends!
So our story continues....
Delighted to report Jake has two "B" grades at GCSE so far - Maths a year early and general science. There is down to the hard work he puts in between episodes and is a sign of his incredible ability to grasp things quickly!.
If you have been following our story about the education system and Jake - you will know school is not really doing a lot still (12 months after diagnoses), as parents we requested a statement from the Local Education Authority back in March, school then began working harder with us and provided some tutoring on a much reduced timetable, whilst the Local Education Authority refused our request.
We appealed this decision, got our MP and consultant involved in writing to them and they changed their mind before it got to court ... today (September 2013) we have the draft of our "Statement for special needs". We now have some heavy reading to do - it is 156 pages long... and a few more meetings to plan but we are celebrating the fact that at last 2 academic years into this journey Jacob has had his Kleine Levin Syndrome formally recognised by the education system and we hoped it would have guidance for them to follow through secondary school and onto college, unfortunately this was not the case, as the LEA did not fill in that section, so we have a statement but no provision.... it is the first zero hour statement our school has seen... so we are going to challenge it!
We understand from the 2nd KLS Conference which was held this weekend in London that Jacob may be the first KLS patient in the country to achieve a statement. A copy of our thoughts from the event can be found here: (KLS Support UK conference London 2013) and details of the fundraising cheque that Jake presented can be found here.
Jake's school year has three more years of compulsory education (it is the first school year in the UK which is stipulating young people must stay in education until they are 18) so having this document (once it is fully agreed and if school work with us) could have a big impact on the next three years... and Jacob is the first teenager with KLS to be statemented - we have also got a draft transition statement S139A which will help us with college.
It is now the end of September, and we have just had two back to back episodes - We lost Jake Tuesday through to 11pm Wednesday he was with us overnight, and then back in episode for another 7 days by 8am Thursday morning.... he came back a week later, 4 hours earlier than he last remember, a tad annoyed.... so we are up to 59 episodes. This 7 day episode was the longest since April, and the longest since we went Gluten free - we had 15 short (less than 4 day episodes) over the summer... and had thought that removing Gluten had changed the pattern and now we just don't know.... on a plus side it is the first time the home tutors have experiences a longer episode and they really don't get how we don't know how long it will last!
Not updated for a while - it is now December, Jacob is still Gluten free, he takes an Iron supplement (we have reintroduced this)- which helps him sleep better (he is less restless at night) and now it is winter he is also taking a low dose vitamin D supplement. Episodes still happen, but we have had more good times. Jake has sleepy mornings when he can't get up, and we can't wake him - when he does wake he is fine, and he has had days of tiredness where things are out of perspective, but other days when he is firing on all cylinders - you still never know. He has a great sleep routine, often in bed by 9pm, avoids alcohol although sometimes has a coffee to keep him going and wake with his alarm on days he is OK. He pushes himself to do his best and it catching up with his tutor work. We are hoping this month - the statement is finalized and everything is in place for January but we are still struggling to get the school to communicate with the Tutors that are provided by the Forest Education Centre (FEC) on what he needs to learn.
Today we finally have a finalised copy of Jake's Education Statement. As far as we are aware we are the first to have a statement in Education in the UK, a huge plus for KLS families who follow on behind us. The reason young people are often not statemented is due to the episodic nature of the condition, and the number of occurrences they have during an academic year - as Jake is an a-typical case - has lots of episodes and misses lots of time, we felt it was essential, school didn't, they did not really feel he had special needs when we started this journey. It took a long time - we applied in March and it has took 9 months to achieve. Statements only apply until the end of the school year they turn 16 too, (for us that is July) so not everyone who finds they are living with KLS knows what they are dealing with by then but we are hoping for Jake that it will open doors to us for an 'S189' for 6th form/college and then onto further education if Jake chooses, and we are happy to share a copy to anyone who requests one as we feel it will be a useful example for other Kleine Levin Syndrome families in the UK, and give other families a basis to work from.
I would not say that this statement gives Jake the best opportunity in the future - but it is a great starting block for other families to expand on - and now it is in place the school and the inclusion service have to work together to deliver Jake's education.... and being statemented has meant that school has to provide for Jake's specific needs so we have now achieved the following for Jake:
If you would like a copy of our statement then please email us at email@example.com and request a copy, meanwhile we would encourage you to fight for your child's future, it is worth doing your research, reading everything and sticking to your guns - we have gone from not having any support in school for Jake - prior to statementing (March 2013) despite him being diagnosed 14 months earlier to being able to access an amazing amount of support, and even more interestingly since battling with school, reducing the pressure on Jake to self teach and beginning to access supportive tutors our episodes have decreased too - we have had more good days and I would like to think Jake is less stressed and pressured to catch up what he has missed.
Jake moves to college in September and we start all over again, but hope that this will help us find the right path for the future - but instead of a statement we need to have an S139A in place, and we need to start looking at the transition process.
Cathie Hill at Southampton is our consultant - we see her and her team every 3 months, and have contact with her by email and phone in-between as needed. At our latest appointment we discussed Jake's great sleep routine, agreed to continue taking Iron and vitamin D for the winter and discussed the possible use of Modafini as a stimulate occasionally (min 100 ml does, 400 ml max) and she is going to look into the possibilities for us. She has agreed that we have Modafini but can't prescribe it and our GP refuses too.... gggrrrr... but our brilliant Consultant finally found a way in January 2014!
We also got to chat to Sarah Matthews a clinical psychologist to discuss the panic attacks and feelings that Jake sometimes experiences, as well as possibilities for Jake to be able to drive. The best advice for the panic attacks is to breathe through it, try and stick it out if possible, know it is OK to leave but to go back if you can... overall it was very helpful.
We end 2013 on a high - Jake was well through Christmas and his 16th birthday - .. but even more importantly, Jacob went 43 days between episodes - we have got to know Jake for over a month and this is the longest time he has been well since August 2011, more recently we have been averaging well periods of less than 2 weeks - so to celebrate 43 days is a huge achievement for us, and at the moment we think we have found something that works....the episode only last 36 hours too :)
Jake is Gluten Free, has a healthy sleep routine with an average of 11 hours sleep a night, avoids alcohol, takes supplements in Iron and Vitamin D. (It has taken a while to build the levels up) ... and we finally reduced the stress of falling behind at school now that his statement is in place ... so for 2014 we hope he continues being well!
A new paper was published on the 20th January 2014 by Dovepress called Kleine Levin Syndrome: A review, you can download it here: It has some interesting points, which can be interrupted in a variety of ways but of significant interest for us are the following points:
So at the moment there are still no answers, no known date when KLS will stop impairing Jake's life, there is still a real lack of research and answers - they do not know of the long term effect of KLS, and suggest Genomic studies need to be carried out. This is happening at University College Hospital London, and we have all sent 4 tubes of blood off to Prof. Henry Houlden in the hope that one day there will be some answers. (spring 2014) - it would be great if you are reading this - you could send samples off too.... in the meantime we continue supporting Jake as best as we can, and hope that 2014 is a better year!
We have been having a bit longer between episodes - could the gluten free, iron and vitamin D supplements be helping? Could it be we now have support at school? Who knows... but we are still monitoring.... KLS does not make sense - we know that much!
His timing was perfect though as he was back in time to join the family for my 40th birthday treat when we flew over London in a helicopter - first time any of the kids flew and it was an amazing experience! Having KLS does not stop you living life - you just need to have a plan A, plan B and a plan C :)
Just back from a meeting with Jake's head - what a difference a statement makes - re his GCSE exams in May and June - we now have plans in place including:
We are sitting 6 GCSE exams this summer - KLS has meant we had to drop a few subjects - but those we are doing we are doing well in and we have a place at college for September (ideally they would like 5 GCSE grade A-C but will accept less if things don't work out)and are in the process of agreeing a help package there!
We sat 2 GCSE last year and got great grades - 2 x B Grade ... so we are 2/5's of the way already.... It took us a long time to get to this point - to my friends battling the education system where ever they are in the world - don't give up - the fight is worth it!
At 16 in the UK - you move from school to college or 6th form, to study level 3 qualifications which are BTec's or A-level's normally or to retake level 2's (GCSE's). 6th form is legally required to follow your statement of Education needs, but further education colleges are not. Our school does not have a 6th form - so Jake will be off to college (he will still live at home) and we started early talking to our local college and their SENCO so we can ensure Jake's needs are taken into account. He is due to start college this Autumn, but just before Easter (a whole term before he starts) we had a great meeting - they wanted to learn all about KLS, so we did a presentation to 7 (yep SEVEN) members of staff and they are looking at ways they can help including:
Jake does not want KLS to define who he is at college, but he does want his new peers and tutors to understand and being open about it will hopefully mean they are all more accepting! I am hoping this is the start if more great things to come - very impressed so far! We are just hoping the help materialises!
The Young Leader belt is awarded to Explorer scouts who regularly give service at another scout section, to complete the scheme Jake had to attend 11 training sessions and complete a range of missions which included running activities and sessions for the 6-8 year old Beaver Scouts.
All young leaders age 14-18 have the opportunity to participate in the scheme if they choose. Jake is lucky to have a very understanding Beaver Leader and her team who accept that he can not always attend, and who encouraged him to do his best!
Jake's last exams today - he officially leaves school next Friday and heads to college (6th form / further education / 16-18 study) in September - we are proud of what he has achieved no matter on the results - the fact that he managed to sit every GCSE exam is amazing and an indication of his and our determination that KLS will not win...
We hope now he has managed to get the grades he needs to get onto the level 3 computer course that he wants to study.... we will find out in August - to get there he needs 5 GCSE grades A-C including Maths & English.
Pre KLS Jake would have sat 10 or 11 GCSE's ... before fighting with the education authority we were faced with just Maths, English and Science - the core subjects that are compulsory to teach.... he could have left school with just 3 GCSE's if he was well on exam day.... When we started GCSE's - September 2013 - we were told at a year group meeting every day they miss matters... it will effect then end grade, and the closest they get to 100% attendance the more chance they have of success - Jake has missed over 200 days to KLS in those two years - yet with 24 hour extensions (the exams in episode we managed in the afternoons, a quiet space for the exams - those he did in a side room on his own, and understanding to schedule the exam when he was physically awake and the 1:1 support from tutors - we only access from the last 12 months), he stands a great chance for a promising future... he continues to amaze us and no matter what results we get, he has done incredibly well and has a good chance.
From a family perspective - the exams have been a living hell... will he make it, if he does sit a certain percentage of each course he fails, if in episode, can he even stay awake let alone write the correct answer? Everyone has treaded on egg shells. Life has revolved around Jake - his siblings have had exams too, GCSE's and mock's and yet the focus of everything is Jake ... it is tough, his future dreams and ours feel like they are hanging by a thread... my own reoccurring nightmare since I started battling with the education authority was that we would miss the lot and I would have to explain to Jake that summer GCSE's were over and he missed them, and all his hard work was pointless - thank goodness that did not happen and he sat all of them to the best ability he had on that day - we are off to see Harry Potter Studio's to celebrate!
Back in January we applied for Jake's driving license - at 16 in the UK you can pass a CBT test and drive a moped, and then at 17 learn to drive a car. If the DVLA refuse you a license - then you get free bus travel (current June 2014) so it is well worth applying. It took 6 months for Jake's license to be approved - you have to declare medical issues on the application form and then it takes time to make a decision... but finally as we got a decision.. and Jake is allowed to drive, there is nothing that can stop him... which is great news, he can get to college on his own, and it has meant that KLS has not stopped him achieving this goal and it is great he can be a "normal" teenager ... whatever that means :), because of KLS though his license will need to be renewed in three years time and they will get in touch with the doctors again to clarify his condition.
August 2014 - It is now three years since KLS joined our family, and three very different years - I am going to recap here:
So where are we now - we have been gluten free for about a year. It could have made a difference - our longest episode has coincided with trying gluten again. Medication - we are not on any ... we just take each day as it comes... hope for the pattern for more good days continues and hope that one day KLS will leave us ... meanwhile we are making plans for Jake to start college in September, awaiting exam results, and hoping Jake is well and able to pass his moped test.
As a family - it is hard. We never know when KLS will strike, it means his siblings have taken on more responsibility, have to work harder and have part time jobs whereas Jake can't - even the lawn mowing job he got once was canceled as she worried she caused the episode... for Jake - he is resigned to it happening, again and again.... he wants to be normal and do what every other teenage does... but it is hard, his friends just don't take the risk anymore ... not many call - thank goodness for online gaming friends! How do we cope - we don't know anything else, we have done three years - the episodes are easier - Jake has learnt to rest rather than fight them, even on good days he is in bed early for a teenager.... and we have no choice but to go with the flow - but if I am truly honest - KLS stinks, as a parent you are forever mourning the loss of what could have been.... whilst battling to ensure that the potential can be reached and that others understand - yet I know that as Jake becomes an adult - this will be a battle that is harder to explain.
But as a family we have learnt to appreciate the good times, we have learnt to adapt to Jake's condition - and he amazes us on how well he adapts too - the condition has evolved - we are managing it better... he has had significantly less episodes, and less time in episode, we have all learnt to listen to his body and encourage rest as much as possible.
We went to see our consultant today with Jake in episode - he refused to wear shoes, was in a wheelchair, did not understand her questions, struggled to respond at all, and wheeled himself around her room banging into the furniture... nothing like the bright articulate young man she normally meets. There was nothing new she could suggest, most drugs seem to try and keep the patient physically awake rather than cognitively and agreed with us that sleep was easier to manage, although she was curious to hear that Jake had a longer episode a couple of week's after gluten, and she would like us to continue to monitor this.
She is please to see that he has spent less time in episode. and we go back to see her in another six months, meanwhile if we need help sooner we can just drop her a line. It was beneficial for her to see Jake in episode, as she admitted it is frustrating at times with KLS to never see the patient when they are in episode as it is so unpredictable.
We did it - despite KLS, Jake leaves school with GCSE A's in Information Communication Technology and Additional Science, B's in Maths, Science, English and General Studies and a C in English Literature - 7 excellent GCSE grades and amazingly proud parents... fighting for the education and supported he needed was worth it. These are results any child should be proud, let alone one with the medical condition that Jake has been battling with for the last three years!
We have the results Jake needs to do a level three course and no re-takes! Amazing!
And an email from his head saying " I was delighted with his results. He thoroughly deserves them and got there on merit. I was half-expecting to have to appeal at this stage. The fact that we don’t need to is down to Jake’s hard work and your persistence. Congratulations. I hope he stays well enough to celebrate!"
We are starting college - Jake is studying a level 3 qualification in Information Technology and to start with he is on a 3 day week - this is the same for all students on his course. They are long days, today is his first full day and he has lesson's from 9am - 4.20pm, as his mum that is a huge deal... will he survive ... the last time he was in school for a whole day with lessons all day was March 2013 - 18 months ago - since then it has been a restricted timetable and tutoring....
He managed 2/3 of the college induction days, KLS took Day 3 - I was gutted, I had hoped new school, more episodes over the summer that we would have a new beginning, a fresh start, no more episodes ... maybe I was in dream land - KLS won't go away just because I want it too ... now we need to learn to together to ensure college understands KLS, that Jake's needs are met and that he learns to manage his needs more and more independently, and I need to slowly let him go.... (it isn't easy with the unpredicted nature of KLS). However Jake did manage all three days in week 2 - so his first full week :) It really is a roller coaster of emotions, finished off with a busy weekend with the 2014 KLS conference where we handed over our fundraising cheque and Jake passing his CBT test and being allowed to drive his moped!
This episode scared us (Jake's parent's), to cut a long story short Jake headed off to college in the morning on his moped, had an ordinary day planned - lessons, lunch break, free period and then more lessons. The first I knew something was wrong was when a tired, pale, quiet Jake walked through the back door at two in the afternoon, he was exhausted, when asked what he was doing home he told me he was too tired to drive so he walked back from college. I asked why he did not call, he said he was too tired to call, he told me he walked the way he drove and then I put him to bed... he woke eventually hungry, thirsty and in episode and with no memory of the journey home.
The college Jake attends is 6.5 miles away, just over 10km. He walked the whole way home, briskly as he was dripping with sweat. The roads have no pavements, they have fast traffic and loose animals on them, it is not a route people normally walk when well let alone at the start of an episode. How he got home, how he walked that far in episode I will never know - I am glad he made it home safe, he was not hurt, he knew not to drive and he did not get lost but it is scary to think he was missing. His college did notice he was gone - they contacted me just as he arrived home - so I did not know he was missing, due to the way his timetable is structured.... it was just bad timing and another thing we had not planned for....
However this episode did mean that Jake got to go to hospital to have a 2nd EEG, his first was in the Autumn 2011, so three years later - it will be interesting now they know he has KLS whether the results show anything new.... update - the results were completely normal - nothing in there at all which could explain or be treated, which is what we expected, and Jake told the consultant he had no idea that it was done.... but the exciting KLS news is for people in my part of the world - my sleep consultant now has set up a Narcolepsy and KLS sleep clinic and it meets monthly - now have access to a Nurse, Clinical Psychologist and a consultant... and have direct email contact with 2 of them already.
Our current concern is that because he was soo exhausted - will the episode last longer than usual, and how will he feel when he is back to normal and we discover how much he remembers about this incident... we will post an update. Update as promised - he came out of the episode after 3.5 days - remembers none of the walk home, just feeling unwell in college so thought he would ring home, a friend made him jump and spoked him and that is the last thing he remembers, he assumed he had rung and I had collected him .... and was very surprised he walked. We now know he walked it really fast in about an hour and a half.... as he remembers roughly what time he saw his friend.... now the next stage is to put it behind us and carry on.... hopefully never to repeat!
New Plans.... because of episode 90 - we now have a new plan - Jake now carries a GPS tracker ... it is an amazing piece of equipment - he has an "SOS" button he can press, and it will call up to 5 people via text with his co-ordinates, it also enable us to find out his location - so if he does not make a class we can check where he is ... we can also set it up with a Geo-fence - so if he has the freedom to explore college, but if he heads for home or outside of a set area we go notified by text he is on the move... so if he wonders off in episode as long as he is carrying the device we can trace him. Details of the tracker can be found here. We will let you know how we get on... ongoing costs are £7.50 a month - worth it for piece of mind.
This is the reason I run - I run because I can... In 2014 I ran my first 10k. In 2015, I am going to run my first 10 mile race - The Great South Run - with my husband Matt, raising awareness of KLS ... Training is not easy, when you need to fit it around episodes, races are tricky when Jake needs 24/7 care... but he can't commit to training when he is having gaps of less than 7 days... so together as a family we are going to commit to this - our teens are going to support Jake whilst we run... and together we are going to raise awareness for KLS and keep hoping that the future will bring answers....
A year ago we were asked if we would like Jake to try 'Lamotrigine' - we said yes, but it came to nothing as our GP would not prescribe and monitor it as it is not licensed for use with KLS - well a year later we finally have a prescription, written by our consultant and provided for us by the hospital... and it will be monitored by us with an email to the consultant if we are concerned - there could be side effects, and we need to build up the dosage slowly... we start with 25mg alternate days, building up over 7 weeks to 100mg a day. We take it every day regardless of whether Jake is well or in episode and hope that they make a difference. Prior to starting the medication.... since August Jake has been averaging a 3.14 day episode every 7 1/4 days. We have just gotta hope it makes a difference and that we have time to get a new prescription (new prescription granted by GP :) ) We started on Lamotrigine on the 8th December 2014.
During his 96th episode - two years after I video the snow (above) - January 2015 - Jake in episode decided to paint a picture on his bedroom wall - totally out of character and there was no stopping him ... you can see him in episode painting it over two days, and then his somewhat dazed reaction about 5 minutes after finding it, once the episode had ended. This does not show all the behavior in a KLS episode - but it does show the episode in a way that our son is happy to share, admit reluctantly - he would have prefered to have been dressed, showered and fed for the last part...
It is now the 1st March 2015 – we have been trying Lamotrigine for almost 3 months, and Jake is taking 100mg every day – he also takes Melatonin each night before he goes to bed, if he misses it he struggles to get to sleep, and he is taking Vit D, B12 and Iron supplements.
So has it made a difference? Maybe ... I don’t know, it could be a coincidence but we have only had three episodes since then and one amber day. Over Christmas we had our 5th longest well time – 26½ days since KLS began, we had a five day episode and we are are currently in another good spell, with only one day when Jake was sleepy/very tired (amber) but with us fully. The averages have changed since August .. we are now averaging 3 day episodes (31/3), our average gap is 12 days. But it could just be that it is time for a change ... I don’t know. KLS is always changing, we just hope it is a positive change.
Since KLS begun I have been recording the length of episodes and the length of well periods in between, below I am sharing our top ten - the most days Jake has been well between episodes .... 2 of them are since taking Lamotrigine in December ... we will keep updating ... at the moment we are in the number one slot... the most well day since KLS begun in 2011 and we are still counting... (update - we got to day 59 and a new episode arrived!).
Consultantant update: back to see Cathie (day 54 of wellness) and she is delighted to hear how well Jake is doing... it is definately a case of watch this space and learn what is happening next... but we did get some interesting news.
Slowly we have reintroduced gluten into Jake's diet - he was gluten for for just over a year and the episodes still came ... he is now at college(sixth form) and it is easier if he eats gluten... it has not really made a difference other than the fact that certain foods like bread, cake, pastry taste way better and he is much more aware about eating a balance diet!
I have not really commented on how hard it is sometimes being a mum to a young person with KLS, he is dependent on you when the episodes are as severe as Jake's and I have no choice but to put my life being on hold, when he is well, you think how long will this last, are you no longer needed, can you discover your true self again and go back to work, can you plan, relax and breathe, are you a still a valid person - then an other episode comes and you are needed again, your life goes back on hold - you feel guilty for wondering how long he is not going to need you and feel bad for thinking of yourself. As a parent you grieve the child that was, you grieve the time you have lost too, you watch them suffer, your dreams shatter too and yet at the same time you have to be ready when they are well let them go - no one other than other parents living through the same hell - understands.
This spring I have found it hard, I feel guilty for wanting my life back, I feel that I don't want to handle other people's problems (but I don't always have a choice) and I do too much for others in the hope they support me in return - but that just doesn't seem to happen, but it is OK, apparently the feelings I am having are normal. When anyone's life changes for medical reasons, it is hard for anyone to adapt to the change - but we do, we have no choice ... when that change is permanent you find a new course... but with KLS that change is variable, you never know when it will be a good day or a bad day, when the new dreams will be broken and you are stuck on a roller coaster you can't get off. You just got to keep going but talk to the people who care about you and make time for doing something for you - on the good days and the bad ones!
Today we are celebrating something that I did not believe that would happen, in the UK at 17 you can learn to drive ... with KLS you can still learn to drive - Jake has a medical licence renewable every three years, but at 17 years old and 4 months he passed his driving test and is now aloud to drive and take passengers out on the roads on his own. We are on schedule - KLS did not stop this happening ... we had an amazing driving instructor who was flexible, if we cancelled a lesson with 24 hours notice he did not charge us ... and by being honest and up front he passed!
More positive news, Jake now has a part time job, at one point we thought this would not be possible, but generally he has been feeling a little better and so when we heard of an opportunity to work weekends, he went along to find out more. We had discussions before hand on whether we should tell the employer about his condition or not, he had a couple of interviews where he told them and he did not get the job, so this time we made the decision to tell them about KLS if they asked if he had one. They didn't at the interview, he was offered a trial session where they asked about allergies, and then was offered the job. They don't know yet he has KLS, we have made the decision to tell them when an epispde effects his ability to work, but actually getting the job, working his first 2 weekends has really helped his self esteem.
Our hospital put on an excessive sleepiness disorder day (June 2015). It was a lovely opportunity for the young people to realise they are not alone - most were dealing with narcolepsy and cataplexy, but there was one other family there with KLS. For some parents it was overwhelming to realise they were not alone, they were all at different stages of their journey, but all were delighted in the support they recieved from others - from people who understood. Southampton would love to run more of these events for parents to meet, and it was great to chat with our consultant and nurse in a relazed enviroment - we heard today they now had five KLS families registered at the clinic, we know three of them, and with the work they are doing educating doctors in the UK and abroad as part of the teaching hospital, things are really moving forward in the sleep clinic and they are starting to be recogised as a centre of excellence. Talking with the family there, it was so encouraging to hear through then that our consultant had passed on details of our school to her daughters school, and they are sharing information on what has helped us.
Today the KLS Conference took place in Atlanta Georgia, we would love to attend but it is an awful long way from the UK - however the KLS Foundation, were amazing - they videod the conference and enable us to listen and watch live from all over the world ... I missed some of it, but what I heard was enlightening, it was with professionals who offered great advcie, from patients who had KLS, and from parents who have been there ... it was amazing to think how the bloods we have sent are helping to find answers, that the latest advice is still to let them sleep and not over stimulate our young people and to keep them safe. If you have not found the KLS site - please visit and sign up for their mail list, and please follow the links to give blood - we did ... they accept UK donations! KLS is not a journey you face alone ... there are people whom understand...
Update: The most recent KLS is available through the KLS Foundation web site - there was a conference held in the US in 2015. Videos of the key speakers at the conference are available via this web site - along with key notes... there are 15 videos in all... the information presented by Arnulf is particularily interesting.
Four years ago when this started I would never have imagined us where we are today – we have an amazing teen who drives a car and who got higher GCSE grades than we imagined possible, he is studying a level three course and has finished the first year with 9 distinctions out of a possible 9, he has a small but loyal group of friends who respect him for who he is. He has got a weekend job, and so far they have been amazingly understanding, and as a family we have raised about £2,000 for KLS Support UK.
Towards the end of this year the episodes seem lighter, he is aware he does not feel right, he is able to cancel plans, he has enough warning of an episode coming on to get help, cognitively it is harder to tell he is in episode sometimes and although each episode still varies and pressure/stress/disappointment seem to make it worse.
We have met some amazing people, some lovely families and it is so important to know we are not alone and every contact we have made has given us the confidence to continue to share our journey and to help others just starting out, to realise to never give up. We have an amazing consultant who is meeting more and more KLS patients ... as our hospital becomes more aware ..there seems to be more cases ... is that because there are so many undiagnosed cases where Dr’s don’t understand? It makes us wonder?
One thing that has become apparent is that we think we have been dealing with KLS much longer than 2011 ... when we look back at the past we can see moments that were different – times when Jake slept more... times when he acted out of character –
I don’t remember all the incidents, they were not important at the time...... at the time we just thought it was Jake, but was it the early stages of KLS ... did it start with lighter episodes / moments missed – I’ll never know, what I do know now is the KLS experience is different for ever family – there is no pattern, no plan, no logic – but listening to your body helps, letting our children rest and sleep when they need to makes a huge difference, trusting our children to make the right decision to keep themselves safe is hard, but not impossible, as Jake becomes an adult the decisions are his, he has a right to make them himself when he is able and as a family we have to be confident he can but all of us need to work as a team to ensure he has the support he requires if an episode happens.
Who knows what the future will bring.... but whatever it brings – we will go with it and face all the potential challenges that come up way. I do though know that as a parent I still find each and every episode hard, it upsets me each and every time, I found it hard to let him go and be normal again, we bgin our 5th year meeting with consultant again this week.
KLS Support UK held its annual meeting today (September 2015) - it was attended by several families and it was lovely to meet some kind and caring people who you know understand what it is like to live with KLS. This is the first one Jake and Matt has missed because Jake was in episode ... Jake should have been at work today - but he missed that too, and Matt stayed home to be with him.
I am glad I was about to attend and pass on the latest fundraising monies .. to hear about the conference in US, and to talk face to face with people who despite KLS are doing really well. I think it is also so beneficial to hear that the best advice for dealing with KLS is for them to stay at home, somewhere quiet, somewhere safe and with 24 hour care - this comes from Prof Arnulf in France, and that currently there is a number of research projects going on to try and find answers, but because it is rare - it will take time.
It was also interesting to hear that there are possibly 97 confirmed KLS cases in the UK, 59 of them adolescences (25 boys) ... and at least 41 diagnosed cases ... with the diagnostic criteria in the text books not matching the reality some of the leading experts are seeing in the field. There are still so many unanswered questions.... and no answers - but it is a great experience to meet others who understand - and more than happy to meet with other families and talk with them, as we can only learn from one another - the true experts with KLS are the patients and the families living with the conditon.
Where are we now...
In December 2014 we started taking Lamotrigine. Jake started on 100mg a day... he has increased the dose to 150mg a day... and although we are still having episodes, they are not as long as they were, in fact - we have just had parents evening at college, and they commented on how well Jake was doing - he has only missed one college day so far in the Autumn term, what a great worker he is and what a great attitude he has to learning and motivating himseld for deadlines!
Current Medication is:
Diet - we have reintroduced gluten with no side effects, so Jake eats a "normal" diet - there is though limited process food as I cook most things from scratch. Jake has alchol occasionally, he has got drunk, but has woken up fine the next morning - tired from the late night perhaps but not episodic ... but he knows to watch his energy levels, and if he is tired he takes time out, rests of has an early night!
We have reached our longest well spell since KLS began, Jake has been well for 68 consecutive days - this is life changing for us. There was a time when a week was good, a fortnight was amazing ... but now we are even considering planning for things in the future. Jake has had a chance to grow and develop as a person, we can almost relax and begin to experience a new normality ... there are lots of questions - for me as his carer - can I return to work, has it stopped, will it end for good, is this it (I wrote that on day 61), how will I feel when it comes back - if it comes back (It did, I feel disappointed and resigned, I hope it does not last long - it didn't - 3 days!- Jake has an important week ahead).... why the gap - is it the meds or something else.... how long do we enjoy the new freedom... (not long enough - we still never know and this episode is hard - he's mute and upset that he is in episode... he feels gutted too!) will we still get support if things start going wrong again - we have been asked to reapply for our statement now the EHCP (Education, Health Care Plan as it applies to the age of 25 but not in Uni!).
So many questions, but still no answers - instead we just appreciate the good days and see where the journey takes us - but I actually feel that there really is hope - it does get better. (I still feel that - I have got to believe!).
This week I read an article about KLS and it highlights that stress is a trigger - I really think that having KLS is a trigger - you have an episode, you miss life - you are stressed by that it triggers another and then the cycle continues - people like Jake who have frequent episodes - they get stuck in a cycle of stress, episode triggered, missed work, more stress, episode and so on... somehow you have to break the cycle - this needs the patient to stop worrying, this needs the right support in place to get them through it and to catch them up, it needs the patient to have a purpose in life, their own goal that they want to achieve, motivation to keep going and a belief that it will end. As a carer we can help fight for the right support, reduce enviromental stress but we can't change how the patients feels, how they react, how motivated they are to keep up the fight and keep them away from sall stress... especially if the KLS keeps winning and stealing time.
I also understand now why you don't always hear follow up stories on the internet, stories about people who have had KLS and are episode free - I don't want to jinx things, but I want to get out there - Jake wants to get out there too - and live life ... and any episode just puts that to the test again! (Feb 2016)
The next step for us to apply to Uni, with Jake's frequent episodes we decided that he would be of less risk if he studied from home and we are delighted to announce that based on his grades he has been offered an unconditional place at University to study computing, so we have started planning for the transition to Uni, met with them to explain Jake's needs and have met with student finance england who help fund any special support he needs. Turns out we are in a year of transition there - Uni has had their funding withdrawn and student finance don't have funds to help.... however the uni's will step up once we complain. We don't think we are asking for unreasonable adjustments .... we just want:
We have met with them twice so far, they have highlighted he must do the group work, resists can be done - but if he missed the exam, he needs to take it and not resit it. They don't record who attends the lectures - yet if attendence falls below 80%, he will be spoken with ... and they will find away to work with Jake to improve that (wish I knew how) and we could apply to student finance for a recording device to record the lectures but Jake would need to turn the device on - if he was well enough to be there, he would not need to turn it on!
At the end of the 2nd meeting they told us they knew all about KLS - they had another student who has applied too, also with KLS who is planning on living in. Cause of confidentiallity they could not tell us who, but thanks to the powers of the KLS facebook community - we found the student, it appears she is at the same college at the moment - however where as Jake is now in his 111th episode and has needed support at college .... she is battling her 6th episode, having missed 6 weeks of college - but for the first time in two years, and it is only now she needs help to complete the course.. Lumping us together - will not work, every case of KLS is unique, we can only share our experience and learn from each other. (April 2016)
It seems to be as our young people become adults there are huge changes for them to contend with, suddenly as parents it is no longer our decision, instead our child is in-charge of his future - which works great and is to be expected when he is well... but when he is in episode it is a how different ball game... now it appears:
Looking back, we are so glad we have talked to Jake about his condition, about what medications he takes and why, and how we have encouraged him to talk ... there is no support yet or guidelines telling him how to move forward, what to achieve ... and at 18 of course the Dr's, Lecturers etc, know best .. they are the professionals ... how is he suppose to stand up to the system and explain that this won't work for him ... it was scary as a parent to question, yet as a young adult ... the challenge must be immense.
When KLS started, school wrote us off... we had to fight and fight to get the supported he needed. He was told he would be lucky to get 5 GCSE's - he managed 7 ... today he got his results for 6th form ... he is the same age as his peers ... he has had 112 episodes since 2011 ...
He also has been awared the "IT student of the College 2016", and got the highest grades possible - as a mum, I am so proud... back in 2011, I never thought this would be possible ... believe in your kids ... it can be!
Five years ago, KLS was a nightmare... KLS is still a nightmare that we live with on a daily basis, but it is not as bad - it is much more like dealing with a cold and an inconvenience with the current episode pattern... at the beginning we did not have hope, now we do ... consistently the episodes have decreased, and we are so glad we have the evidence to back this up. Medication wise Jake takes Vit D3, Iron supplements, B13, 200 mg Lamotrigine daily with his evening meal and 5mg of Melatonin before he sleeps...
He has off days, he can drink, has got drunk and has not had an episode. He has a healthy sleep routine ... if he has a late night, he has a chill day to make up for it and takes the day off work... if he has a lay in or stays out late he feels worse the next day ... keeping his sleep hours consistent seems to make a huge difference and with the extended well time ... it means we get to know Jake, he is planning stuff, believing he is well and we are too ...
From the 25th May -2nd September - 101 days good days without an episode, sadly he then has another one and missed a weekend off work - and although I was achingly disappointed for him, and he was pissed, it only lasted 2 and a half days ... we have a new record to beat ... so here's hoping....
Now here is an idea... we want to prove anything is possible... and during the course of his degree as a family we want to continue to raise funds and awareness for KLS - so we have set up a new fundrasing page here ... if you have found our story helpful... then please donate here to add to Jake's total for the National Support Group.
15th December 2016 ... Today is an important day to share the message of keep living strong and not to let KLS (Kleine Levin Syndrome) win. Today we reached a special day - it is Jake's 102nd consecutive well day, our longest well period since 2011... and he has headed of to Uni, it is the last day of term and it is the first term since 2011 they he got 100% attendance. Back in 2011 he was lucky to make 30% attendance ... and today is the start of him making bigger and better plans ... the adventures of life are now running at full steam! He has just paid the deposit on a Uni dig and plans to move out in September 2017 and spend his 2nd year at Uni living out!
19th Februrary 2016 ... It has been just over 5 months – 167 days ... and that means that Jake has been well and episode free for that long – it is his first episode since starting uni... so we will have to see what happens, but he has had an amazing few months... but today he is back in episode, and he knows it ...it has been life changing for us... today is hard for all of us - we had hoped it was gone for good... but we are wrong... but it has improved and having 5 good months has been amazing - so now we have a new record to beat! This gap was 1.5 times the last gap... lets hope that pattern continues!
This episode lasted 3 days - Jake missed 2 days of Uni, and for the first time I am impressed, I contacted Uni to say he would not be in, and he has already had notes from 3 lectures, some scheduled support and is personal adviser rang promising 1:! catch up as needed. We cancelled work, as soon as he was better he rang in and was given extra shifts, and on top of that he had messages from his phone from friends that missed him. It is amazing how much support we all got from people online who care, and every comment was appreciated. Amazingly Jake has bounced straight back - it's done, over and he is booked a trip out with mates!
Where are we now...
As a parent with KLS - where am I now...I am finally returning to work, I no longer worry he is going to have an episode, I no longer think is he going get up today, and I am building my life back up - I can't always be there, his siblings are now 18, everyone in our household is an adult and issues will be dealt with as they arise but they are no longer dependent on me providing the soloution and the care. It is now no different than managing someone with a cold or viral infection - you don't plan for that sort of thing, you just deal with it... Yes KLS still happens, we still cant predict it - but we have come so far...
I would never have thought when I started fighting for Jake's diagnose and his right to education that he would be where he is now ... heading towards 2nd year Uni, leaving home and just being normal - I am a different person than I was six years ago, and my best advice for other families...
As a parent my role is purely to be in the background and be there if needed, and hopefully I wont be :)
OK I am wrong, I am still needed - Jake has had another episode, but he was able to call home from his student accommodation for us to get him. We have discovered that what we had hoped was in place at Uni was not - new academic year, so new staff and they seem to think we can give notice of an episode, so on this occassion Jake missed a deadline - we hoping it does not happen again and college can support him as they promised they would, however we did manage to video Jake in episode and three hours later, but we really don't think there is any support there, interestingly they now think it is his problem and he needs to manage it in episode - we are just grateful the episode was over in a few days - they were not even willing to watch the recent video explaining why he could not communicate.
We are also now struggling to renew Jake's driving licence - we are waiting on a medical report, and as he has now moved to adult services but we have never been transferred there appears to be no one able to complete the relevant paperwork, which is a little worrying.
Jake and Meg (another KLS patient) are both at the same Uni, and have both been interviewed by a journalist student, Emily Shepherd about their KLS, she also seeked the views of Jake's sister and Prof Nutt, - you can listed to the finished report below and can hear Jake's view about living with KLS, and read more details here: http://buzz.bournemouth.ac.uk/2018/01/living-kleine-levin-syndrome-unknown/
April 2017 - 179 good days - 3 days short of six months - but our longest well spell yet! But today he has done amazing, he got himself home (to his house from Uni) call for a pick up as felt not safe to drive and cancelled his plans for the next couple of days! For me this is huge, he can live independently, and get help when he needs it. I am sad he has gone into episode, but we have stopped thinking of a plan B for everyday - to the extent that last weekend Jake was playing Quidditch in a competition in Reading with his uni friends and I had popped accross to Dublin in Ireland for a weekend of photography - there was no plan B!
June 2018, we were invited back to children's outpatients for an update and to look at moving into adult clinic - Jake is now 20, so has a laugh at the fact the nurse needed to weigh and measure him, and he wandered off into the room on his own - he was out within 10 minutes, having told her how well he was doing, the fact that he was not taking any meds, nearly had 6 months between his last two episodes, and that he had clear warning signals, she suggested that instead of transitioning him to adults, they discharged him and he got back to his GP if in future the symptoms worsen.
So I guess we no longer have a consultant, we are back to following on our path and living on own adventure!
After a great 2nd year at uni in student acommodation we now say Bye bye Uni and hello placement year - a year in employment and living further away from home. Our longest episode was just 2.5 days, we not on any medication, and our longest gap was 179 days. It has not gone, and Jake is still one hundred percent dependent on adults around him when in episode, but he can get help, he can wait to help arrives and he is able to communicate that he needs help. One day we will beat this condtion.
A more important challenge now is Jake's personal challenge - Man Vs Mountain which will take place in September 2019.
This legendary mountain adventure race starts at sea level in the stunning Caernarfon Castle and weaves its way to the summit of Snowdon and down the other side into Dinorwic Quarry where we’ve thrown in an array of punishing obstacles, including the infamous Vertical Kilometre, for you to tackle before you can cross the finish line victorious. Jake will run and walk over 22 miles, ascent to 5055ft from sea level, all in one amazing day supported by his University friends. This is no mean feet for someone with a sleeping condtion. More details of the event here.
As we enter the 8th year of KLS... I will summarise what had happened in the last year - he takes no mediation, has no consultant, and Jake has done his placement year - he held down a full time job in a demanding computer networking and security enviroment, he lived 2 hours away from home and got on really well with his workmates, had a great social life, travelled all over the UK and visited Europe with his Quidditch team, took part in the British Quidditch cup and lived life to the full. He averaged 86 days between episodes, with the average episode lasting 2 days. (They ranged in duration from 1 day to 3.5days). and he had 4 days in episode in total. His boss was understanding, when he went into epsiode (both at home and at work) he was able to call home and we went and collected him, brought him home with some of his belongs and let his sleep - within a couple of hours of the episode ending he was back off home and busy carrying on with life. He missed 8 days - and that is no worse than being off sick from work with a cold. It is still KLS, it is still unpredictable, and it still sucks... but Jake lives every episode like it was his last and we really hope soon it will be!
Wow, having never done a running event before Jake ran 22 miles from sealevel to the top of Snowdon (the tallest mountain in Wales) in about 8 hours. Team Renouf - his brother, sister, mum and dad joined him at the summit and met him at the finish after walking a mere 18km (just over 11.1 miles) and raised over £400 in the process... add to it he drove the 5 hour trip to Snowdon on the Friday prior to Saturday's run and drove the 5 hours home on the Sunday with an hour detour each way to drop off a friend!
If anyone suggested that this was even an option at the beginning of our KLS jounrney I would have thought they were crazy... with less than 6 months between epsiodes I would have thought this was an impossible dream... but Jake believed he could do it and he could. I am amazed and inspired by what he achieved ... and even made it to work on Monday morning!
94 good days! On his 95 day he work up in Barcelona, where he was on holiday with his mates - he did not feel right! He was just over 1,000 miles from home. He made contact via messenger and I soon worked out he was episode, could not talk with his friends and was due to explore the city before travelling back to the UK and then driving 150 miles home dropping some of his mates off on the way. I was in the UK... but I quickly got the essentials, I was able to get him to add me to a group chat with the people on the trip (whom had never seen an epsiode before), I was able to find out where he car was parked and where his passport was. I chatted to them online, I explained, they could not work out why Jake was not talking and through experience I was able to advice them on his inability to make decisions, that he did not want to let them down and that crowds would be difficult. A plan was agreed - Jake would stay with a member of the group all day (phew), they would travel to the airport early (as they had to check out and there was a lot happening in Barcelona) and the group would split with Jake travelling by taxi with a small group and the others by train. I tracked him the whole way. At the airport they were through security early, (several hours before their flight) and were airside - one of the group found a wheelchair, Jake sat in it - I helped choose his lunch (remotely), as he could not decide and the the group made sure he had food and water, as I provided reassurance as they were worried about ignoring him and he was just looking blankly at his mates. They waited for their flight. It was delayed, but they got him on board. (PHEW) Meanwhile hubby and I drove to the airport (me communicating as needed until they took off) - found his car and got them all home. The 3 in Jake's car were pleased they can still have a lift, Matt drove Jake's car and his friend home and I took a very emotional and tired Jake. I got home to read that the riots in Barcelona had got worse, ten of thousands had took to the street and the airport was full of rioters, with flights delayed and blockages in place - see news. How he got through all that I don,t know, his friends are truly amazing... they told me they got him home, cause Jake would have got them home... and I feel so overwhelming proud.
When I started the KLS story on this page, I was worried Jake would miss out, he would struggle with friendships and he did for a while, and he would not achieve and now I am blown away by the support of his friends and mine - those who reached out to help, those who got Jake home, who just understand and whom just wanted Jake to be OK - he will be OK... episodes end, and this experience is not going to stop him, instead it will just reinforce that plan B is always an option... and as a family we can always find a plan B!
As we mark 2020 - we are in a very different world - the Covid-19 pandamic caused the world to shut down... the UK experienced for the fast time what it felt like for the goal posts to move, to work from home became the norm and nobody could plan ahead - scary times - but as a family it felt normal. Our world had closed with little notice, we could not see friends and family and we were not in control and we had no idea when it would end, what to expect next and if today was a good day. As a parent I worried that the world would change beyond recognition whilst my son had an episode - he meanwhile breezed through, got his Uni dissertation done, was happy self motivating himself, catching up with friends online and had no issues.
How's KLS? It is still there... Episodes are now averaging 2 days - longest 4 days this year - whilst in Spain, shortest 1/2 a day.... and we have had only three - comparable with a cold! Average Gap between episodes - around 100 days but the most important this is Jake can spot them coming and lets us know!
Jake has had KLS since 2011... his school attendance was down to 30% and we were told he would not achieve...
Not just Graduated .. he graduates with a 1st degree with honours... last week he moved into a 1 bed flat and on Monday he starts work full time at a Network Engineer.
I still remember that feeling when I was told he would not mount to anything, and then I met someone at a KLS UK conference who told me their son episodes had stopped and he was living a normal life... they lived every episode in the hope that was the last.... I knew at that moment, as parents we needed to believe our son would follow the same path.... we could not be prouder of what he has achieved. His degree is his moment... but I want you all to share in that moment... no matter where you are on your KLS journey... live like the last episode was your last... <3
Jake has accepted a job offer to be a Network Operations Engineer for a cloud computing company - full time - shift work - and he now lives on his own in a one bed flat about an hour and 45 minutes away. He is sharing with us his shift pattern so we can work out when he is at work and if this is a blip, we have his back... If I knew in 2011 that by 2020 he would be working full time in the industry he was aiming for, when most of his graduate friends are struggling to find work and he is there 100% on schedule with his peers, maybe we would not have battled . We never gave are hope.... if you are reading this - beleive in yourself and your child... anything is possible!
We have had some great support over the years.
If you don't want to support us directly perhaps you can help Jake raise funds for KLS Support UK - details can be found here.