Lewis Story.. About Lewis Herbert
Lewis Story.. From the Beginning
Having been together since 1995, my wife Lexi and I found out in January 2002 that we were going to have our first child. We were both really excited and overjoyed with the news and were both so looking forward to what the future would hold and that we were going to have our own little family.The nine months went really quickly (well for me anyway!) and we got everything prepared and organised at our lovely little first time home for our pending new arrival.
After an extremely long and painful 34 hour labour as well as being stuck at 8cm dilated for 6 hours!. They kept losing the heart beat and put it down to amount of hair and finally being rushed out by the consultant as he was getting distressed, Lewis Robert Herbert was born on 12th November 2002 at 12.20am weighing a healthy 8.2lbs.
I was so proud of Lexi for everything she went through during and after giving birth and I couldn’t have been happier with welcoming our perfect little boy Lewis into the world.I was literally bursting with pride, it was the most incredible moment of my life and a feeling that is very hard to explain unless you have experienced it yourself.
I will never forget the journey back home from hospital and thinking that every car was going to hit us and damage and hurt our special little cargo. I just wanted to get him home safe and the 10 minute journey felt like a 4 hour one. We finally arrived home and we settled Lewis into his new surroundings.
Our first baby was here and we couldn't wait to start our family life. The next chapter for Lexi & I. Lewis was the most beautiful thing we had ever seen. We had so many dreams and hopes for our little boy.
By the time Lewis was five weeks old we noticed that things were not quite right. He had started to jerk alot, he looked like he was having an electric shock!. The weeks went by and after seeing the Doctors and Health Visitor numerous times and after them initially putting these jerks/spasms down to colic!, we were finally sent to hospital to get some answers.
On the 13th February 2003 aged just 12 weeks old and after Lewis going through a number invasive tests, we were told the devasting news that an EEG had confirmed that Lewis was having seizures. He had a particular eeg pattern called hypsarrhythmia and was diagnosed with Infantile spasms and a condition called West Syndrome.
I will never forget that day as long as I live. Lexi and I were taken into a dark dingey room on the children’s ward at Northampton hospital and told the life changing news by a consultant. It was basically a case of your son has this condition and this is the drug we are going to try him on first!. We had never even heard of this condition before and had absolutely no idea about the massive impact it would have on Lewis and our whole family.
The news hit us like a ton of bricks, and literally took our breath away. A big part of me died that day along with all of Lewis' dreams!. It felt like our world had ended, so many questions why Lewis?, what has he done to deserve this?, will he be ok?, what does this mean?, what can we do to make him better, did we do something wrong, this isn’t the way it was meant to be? etc etc etc.
Lewis was discharged on 14th February 2003 (Happy Valentines Day hay!) with the first anticonvulsant they wanted us to try and we were basically sent home to get on with it with no real professional support as regards advice counselling of what to expect and what a devastating effect this condition was going to have on Lewis and how it was going to change our lives forever. Our world was literally turned upside down from that day onwards and our lives would never be the same.
Our first baby was here and we couldn't wait to start our family life. The next chapter for Lexi & I. Lewis was the most beautiful thing we had ever seen. We had so many dreams and hopes for our little boy.
By the time Lewis was five weeks old we noticed that things were not quite right. He had started to jerk alot, he looked like he was having an electric shock!. The weeks went by and after seeing the Doctors and Health Visitor numerous times and after them initially putting these jerks/spasms down to colic!, we were finally sent to hospital to get some answers.
On the 13th February 2003 aged just 12 weeks old and after Lewis going through a number invasive tests, we were told the devasting news that an EEG had confirmed that Lewis was having seizures. He had a particular eeg pattern called hypsarrhythmia and was diagnosed with Infantile spasms and a condition called West Syndrome.
I will never forget that day as long as I live. Lexi and I were taken into a dark dingey room on the children’s ward at Northampton hospital and told the life changing news by a consultant. It was basically a case of your son has this condition and this is the drug we are going to try him on first!. We had never even heard of this condition before and had absolutely no idea about the massive impact it would have on Lewis and our whole family.
The news hit us like a ton of bricks, and literally took our breath away. A big part of me died that day along with all of Lewis' dreams!. It felt like our world had ended, so many questions why Lewis?, what has he done to deserve this?, will he be ok?, what does this mean?, what can we do to make him better, did we do something wrong, this isn’t the way it was meant to be? etc etc etc.
Lewis was discharged on 14th February 2003 (Happy Valentines Day hay!) with the first anticonvulsant they wanted us to try and we were basically sent home to get on with it with no real professional support as regards advice counselling of what to expect and what a devastating effect this condition was going to have on Lewis and how it was going to change our lives forever. Our world was literally turned upside down from that day onwards and our lives would never be the same.
I love Lewis dearly and always will. I would do absolutely anything for him, but every single day I wish I could take away his pain and suffering.
I love chilling with Lewis in his sensory room at home. It’s so relaxing and he gives the best cuddles (when he wants to!). Lewis enjoys and seems to respond to visual and audio stimulation , so having a sensory room at home is perfect for him. He loves his music and also seems to enjoy looking up at trees when we go for walks.
Lewis is my hero and we all adore him and love him unconditionally. He is our world and we would be totally lost without him.
When your world breaks like ours did, it is like having to piece back your life but always having one bit missing. And to this day we have still not found that missing piece. But it hasn't stopped us enjoying the picture and seeing the beautiful things that it can bring, even if it is incomplete.
He is our very special and unique boy!
I love chilling with Lewis in his sensory room at home. It’s so relaxing and he gives the best cuddles (when he wants to!). Lewis enjoys and seems to respond to visual and audio stimulation , so having a sensory room at home is perfect for him. He loves his music and also seems to enjoy looking up at trees when we go for walks.
Lewis is my hero and we all adore him and love him unconditionally. He is our world and we would be totally lost without him.
When your world breaks like ours did, it is like having to piece back your life but always having one bit missing. And to this day we have still not found that missing piece. But it hasn't stopped us enjoying the picture and seeing the beautiful things that it can bring, even if it is incomplete.
He is our very special and unique boy!
Read More: Managing My Mental Health
Lewis' Story.. His Medical Journey 0-18 yrs
After diagnoses at three months old we were sent home with the first anti-convulsant to try for Lewis, a medicine called vigabatrin which apparently “ has a good success rate of reducing/stopping seizures for babies with Infantile Spasms/West Syndrome”, not Lewis though he had another agenda and this continued to be the pattern throughout the years and continues to be the case still today.He has tried countless anticonvulsants (15-20 different types approx.) as well as vagal nerve stimulation, none of which have got anywhere near to stopping his seizures. He has been on two to three at one time and we have revisited certain medications a second time with out any success. The most the seizures reduced by was when he was on steroids when he was about a year old, but due to the related side effects this wasn’t a long term option.
As the years went on Lewis’ seizures got worse and they were destroying his chance of ever developing normally. He went through a battery of tests, blood tests every few months, ECG'S, EEG'S, CT Scans, MRI'S, Lumber punctures etc etc. The list goes on, this was year after year, with no explanation found as to why this had happened to our special boy. He had so many seizures that his little brain couldn't function properly and grow and develop. His seizures were all drug resistant and have always been.
Over the years as he went through all the different anticonvulsants we began losing hope and quite quickly we went into every new drug regime expecting it not to do anything or work. It was, and still is, a case of ticking every possible avenue off the list of things to try.
At about the age of seven his condition had evolved into Lennox Gastaut Syndrome. This type of epilepsy syndrome is uncommon and occurs in between 1 and 5 in every 100 children with epilepsy, and approx 2 out of 10 children will develop Lennox-Gastaut syndrome after previously having West Syndrome like Lewis.
One of the many problems with Lennox Gastaut Syndrome, is it’s a mixed and multiple seizure (drug resistant) disorder and unfortunately Lewis is on the very worse end of the syndrome. He has so many different types of seizures which include the following;
Absences, myoclonic jerks, cluster spasms, tonics, tonic clonics, non-convulsive status, gelastic, dacrystic and atonic seizures, as well as being at risk of SUDEP (sudden unexpected death in epilepsy) 9 different types!....
So what tends to happen is that a certain anticonvulsant can reduce a certain type of seizure to begin with, whilst others often increase, and then because his brain waves are so abnormal the seizures that reduced return with avengence. This has been the case the whole way through his life and throughout all the different medication he has tried.
An epilepsy nurse once explained to us that it’s like a “box of fireworks” going off in his brain and constantly sending incorrect signals to his body. I have always remember this and it is a good way of explaining it to people in lamen terms.
Over the years as he went through all the different anticonvulsants we began losing hope and quite quickly we went into every new drug regime expecting it not to do anything or work. It was, and still is, a case of ticking every possible avenue off the list of things to try.
At about the age of seven his condition had evolved into Lennox Gastaut Syndrome. This type of epilepsy syndrome is uncommon and occurs in between 1 and 5 in every 100 children with epilepsy, and approx 2 out of 10 children will develop Lennox-Gastaut syndrome after previously having West Syndrome like Lewis.
One of the many problems with Lennox Gastaut Syndrome, is it’s a mixed and multiple seizure (drug resistant) disorder and unfortunately Lewis is on the very worse end of the syndrome. He has so many different types of seizures which include the following;
Absences, myoclonic jerks, cluster spasms, tonics, tonic clonics, non-convulsive status, gelastic, dacrystic and atonic seizures, as well as being at risk of SUDEP (sudden unexpected death in epilepsy) 9 different types!....
So what tends to happen is that a certain anticonvulsant can reduce a certain type of seizure to begin with, whilst others often increase, and then because his brain waves are so abnormal the seizures that reduced return with avengence. This has been the case the whole way through his life and throughout all the different medication he has tried.
An epilepsy nurse once explained to us that it’s like a “box of fireworks” going off in his brain and constantly sending incorrect signals to his body. I have always remember this and it is a good way of explaining it to people in lamen terms.
Lewis has always had hundreds of seizures made up of all the different types every day since diagnoses and we feel from birth. These can and have been into the thousands during different times of his life. Trying to explain the sheer quantity of seizures he has to people is and remains so difficult and upsetting. I wish I could have a pound for the amount of times I have had people look at me as if they don’t believe me, or simply cannot comprehend the sheer quantity of daily seizures he has, like I’m lying!.
He can have well over a 1000 seizures EVERY day (see video on the right), and this doesn’t include the ones he has overnight night. This figure can often be even more on a bad day.
We were once told by a Consultant Neurologist specialist at John Radcliffe hospital in Oxford that Lewis will never walk or talk, and that he will need 24hr 2-1 care everyday for the rest of his life.
Lewis requires 24hr care everyday. He is unable to do anything for himself. My Wife (Lewis’ Mum) and I provide all of Lewis’ personal care on a daily basis.Lewis is extremely hard work, and he is getting bigger and bigger which is making it harder and harder for us to move and carry him.
Lewis' seizures still remain extremely drug resistant, and despite being on at least 20 different drugs over the years with different combinations, his VNS, Oxygen therapy, and a special ketogenic diet he is still having around 1500 multiple seizure types every day.
Over the past 18 years we have spent what seems like an endless amount of time in hospital with Lewis for tests, appointments (Northampton, Oxford JR, Bristol,GOS, Kings College London) and when he has been unwell. It just seems like an endless supply of health related appointments in hospital or at our home with so many different professionals from different areas of health in communication, it completely takes over your life, week in week out, and there is very little time left to do anything else. It totally consumes your life.
Lewis has been on CBD oil for over a year now, and it has significantly reduced the quantity of his seizures, but unfortunately it hasn’t improved his quality of life at all.
We have been lucky enough to have had the same Consultant Paediatrician for Lewis throughout the whole of the past 18 years. This has been vital for us and he has been simply amazing throughout this whole time. Nothing has been too much trouble and he has gone above and beyond to help us as a family. We have been able to speak to him about anything and he has always had time for us no matter how busy he must have been.
He can have well over a 1000 seizures EVERY day (see video below), and this doesn’t include the ones he has overnight night. This figure can often be even more on a bad day.
Lewis’ development is severely delayed due to his condition. He has never been able to develop due to the sheer quantity and severity of seizures he has always had, and that they have never been able to get anywhere near getting the seizures under control with medication. He is basically a 3 month old baby in a 16yr old’s body. He cannot do, and has never been able to do anything for himself and relies on my wife Lexi and I for all of his needs. We both had to give up work when Lewis was about eight years old as he began to require 2-1 care as he got bigger and more demanding.We were once told by a Consultant Neurologist specialist at John Radcliffe hospital in Oxford that Lewis will never walk or talk, and that he will need 24hr 2-1 care everyday for the rest of his life.
Lewis requires 24hr care everyday. He is unable to do anything for himself. My Wife (Lewis’ Mum) and I provide all of Lewis’ personal care on a daily basis.Lewis is extremely hard work, and he is getting bigger and bigger which is making it harder and harder for us to move and carry him.
Lewis' seizures still remain extremely drug resistant, and despite being on at least 20 different drugs over the years with different combinations, his VNS, Oxygen therapy, and a special ketogenic diet he is still having around 1500 multiple seizure types every day.
Over the past 18 years we have spent what seems like an endless amount of time in hospital with Lewis for tests, appointments (Northampton, Oxford JR, Bristol,GOS, Kings College London) and when he has been unwell. It just seems like an endless supply of health related appointments in hospital or at our home with so many different professionals from different areas of health in communication, it completely takes over your life, week in week out, and there is very little time left to do anything else. It totally consumes your life.
Lewis has been on CBD oil for over a year now, and it has significantly reduced the quantity of his seizures, but unfortunately it hasn’t improved his quality of life at all.
We have been lucky enough to have had the same Consultant Paediatrician for Lewis throughout the whole of the past 18 years. This has been vital for us and he has been simply amazing throughout this whole time. Nothing has been too much trouble and he has gone above and beyond to help us as a family. We have been able to speak to him about anything and he has always had time for us no matter how busy he must have been.
Read More: Managing My Mental Health
Lewis' Story.. His Day to Day Life
When we were sent home on the 14th February 2003 after Lewis being diagnosed and with his first medication in hand we had absolutely know idea that from that moment on our life had changed forever. For the past 18 years our world has been turned up side down, and the impact on our day to day life has been life changing in so many ways. 
I am and have always been like his secretary and PA (Personal Assistant), from chasing up and asking for changes to his prescriptions, to writing letters for funding, to arranging equipment assessment appointments, to countless application forms, care reviews, re-assessments, to the hours spent on the phone discussing his needs and chasing people up, endless amounts of paperwork relating to Lewis. It really does consume your life and is so time consuming, I think unless you have had a severely disabled child you cannot comprehend the sheer amount of extra work which goes with it compared to raising a “normal child”. We are constantly reminded of what Lewis can't do and have to repeat ourselves all the time to so many different professionals who have come and gone over the years. We have been made to feel very awkward with some of the questions which have been asked by certain people and have been made to feel that we arn't looking after Lewis properly!.
Basically our whole life has and still does revolve around Lewis. Everything has to be planned and structured to his needs otherwise it just wouldn’t work. Just trying to get out the house with him takes forever and is a logistical nightmare.
As he relies on us for absolutely everything, caring for him takes up a massive part of our day and there is very little time left for anything else. It’s very repetitive and is like groundhog day everyday.
Basically our whole life has and still does revolve around Lewis. Everything has to be planned and structured to his needs otherwise it just wouldn’t work. Just trying to get out the house with him takes forever and is a logistical nightmare.
As he relies on us for absolutely everything, caring for him takes up a massive part of our day and there is very little time left for anything else. It’s very repetitive and is like groundhog day everyday.
- Get him washed, dressed and in his wheelchair
- Prepare and give him breakfast
- Administer morning medications
- Hoist into sensory room
- Spend morning in sensory room watching T.V etc
- Morning water
- Hoist back into wheelchair for lunch
- Feed him lunch
- Back into Sensory room for the afternoon
- Mid afternoon water
- Back into wheelchair for Dinner.
- Feed him Dinner and do evening medications.
- Back into Sensory room for chill out! time for an hour
- PJ’s on ready to bed.
- Back in wheelchair and put to bed at about 7-7.30pm
The above is just a snap shot of our day and is the easy part of his care. As well as this we have to provide VNS and Oxygen therapy during and after his seizures. Lewis can have over a 1000 seizures a day to we are always having to be on guard to provide care during and after his seizures. We have to make sure we are with him all the time to keep him safe and to provide comfort during, and after his seizures. As well as this we have to provide him with personal care as he is doubly incontinent and in nappies.
Once he is in “Bed” this is by far the end of the day. Lewis has always really struggled to sleep at night due to his seizures. He can be fast asleep and then can have a seizure and then spends the next couple of hours awake and then this is repeated throughout the night. We have CCTV monitor in our bedroom (which is on a different level of our house) and my poor wife Lexi who really struggles to sleep, gets up to him to provide comfort, vns and oxygen therapy during his seizures at least 3-4 times EVERY night. Lewis is at risk of SUDEP (sudden unexpected death in epilepsy).
All of the above is then repeated the day after and the day after that…….. and this has been the case for the past 18 years. It is so repetitive and completely mentally and physicially exhausting. I dread to think how my poor wife Lexi must feel as she gets very little sleep if any some nights, I’m absolutely exhausted most days and I’m the lucky one as I'm able to at least get some sleep.
Caring for Lewis takes up so much of our day that there is very little time for anything else, and if there is anytime we are so mentally and physically exhausted that we don’t feel like doing anything.
We are lucky enough however to have three wonderful personal assistants, Debbie, Callum and Sammii (they are all part of the family) who come to us regularly during every week to look after Lewis, so that Lexi and I can have a bit of rest bite and spend some quality time with Kira and Oscar, which is absolutely vital for them.
Lewis is due to move into adult services and leave school within the next year and I am absolutely dreading it to be honest as I don’t know what it will be like for him and us. It is the unknown and not knowing what to expect, plus I have heard so many horror stories of when disabled children move into “adult” services.
I’ve got to be honest I am worried sick about what the future holds for Lewis and us as a family as he moves into adult hood!. It is on my mind on a daily basis and causes me a lot of stress and anxiety.
Once he is in “Bed” this is by far the end of the day. Lewis has always really struggled to sleep at night due to his seizures. He can be fast asleep and then can have a seizure and then spends the next couple of hours awake and then this is repeated throughout the night. We have CCTV monitor in our bedroom (which is on a different level of our house) and my poor wife Lexi who really struggles to sleep, gets up to him to provide comfort, vns and oxygen therapy during his seizures at least 3-4 times EVERY night. Lewis is at risk of SUDEP (sudden unexpected death in epilepsy).
All of the above is then repeated the day after and the day after that…….. and this has been the case for the past 18 years. It is so repetitive and completely mentally and physicially exhausting. I dread to think how my poor wife Lexi must feel as she gets very little sleep if any some nights, I’m absolutely exhausted most days and I’m the lucky one as I'm able to at least get some sleep.
Caring for Lewis takes up so much of our day that there is very little time for anything else, and if there is anytime we are so mentally and physically exhausted that we don’t feel like doing anything.
We are lucky enough however to have three wonderful personal assistants, Debbie, Callum and Sammii (they are all part of the family) who come to us regularly during every week to look after Lewis, so that Lexi and I can have a bit of rest bite and spend some quality time with Kira and Oscar, which is absolutely vital for them.
Lewis is due to move into adult services and leave school within the next year and I am absolutely dreading it to be honest as I don’t know what it will be like for him and us. It is the unknown and not knowing what to expect, plus I have heard so many horror stories of when disabled children move into “adult” services.
I’ve got to be honest I am worried sick about what the future holds for Lewis and us as a family as he moves into adult hood!. It is on my mind on a daily basis and causes me a lot of stress and anxiety.
Read More: Managing My Mental Health
Lewis Story.. His Consultant.. Thank you Dr Hewertson
Very often health care professionals go under the radar and are not recognised for their amazing timeless work. We would like to put on record our experience of Lewis’ Consultant Paediatrician and give him the credit and recognition he very much deserves.Yesterday was a sad and emotional day for us both as Lewis had his last appointment (transition) with his wonderful Consultant Paediatrician at Northampton General Hospital (NGH) Dr John Hewertson. It really is an end of an era for us, as we have been through some much whilst under his superb care.
Dr Hewertson has been Lewis’ Consultant for the past 18 years and he has always been our first port of call. We have been extremely lucky to have had him as Lewis’ consultant. He has always gone above and beyond to try and help Lewis and our family, nothing has ever been too much trouble and he has always been compassionate, caring and thoughtful towards Lewis, Lexi and I, and for that we will be forever grateful.
He has a highly pressured and stressful job, and his time is very precious, but we NEVER EVER felt under time pressure when speaking to him during appointments, on the phone or whilst on the hospital ward, he always made us feel like we had all the time in the world to talk to him, no matter how busy he must have been.
Nothing has ever been too much trouble for him and he has helped and supported Lewis and us so much, and we have all been very lucky to have him in Lewis’ life.
From the very start he has always been very honest about the severity of Lewis’ condition and has never given us false hope, and for that honesty we are also very grateful, no false illusions.
No matter how upsetting an appointment or hospital visit was, we were always able to have a laugh and a bit of fun to lighten the mood, he has a brilliant sense of humour.
We are going to really miss you John, we now see you as more than Lewis’ consultant we see you as a friend and we really hope we stay in touch.
Thank you for everything you have done for us, you’ve been an absolute star.
Gary, Lexi and Lewis x
Nothing has ever been too much trouble for him and he has helped and supported Lewis and us so much, and we have all been very lucky to have him in Lewis’ life.
From the very start he has always been very honest about the severity of Lewis’ condition and has never given us false hope, and for that honesty we are also very grateful, no false illusions.
No matter how upsetting an appointment or hospital visit was, we were always able to have a laugh and a bit of fun to lighten the mood, he has a brilliant sense of humour.
We are going to really miss you John, we now see you as more than Lewis’ consultant we see you as a friend and we really hope we stay in touch.
Thank you for everything you have done for us, you’ve been an absolute star.
Gary, Lexi and Lewis x
Read More: Managing My Mental Health
Lewis Consultant.. Dr Hewertson
Lewis Story.. His Medical Journey and Day to Day Life.
The Journey of a Special Needs Father by Gary Herbert