The Boy Behind The Bud
As told by his mom Charlotte Caldwell
Billy was born in July 2005, 34 weeks by cesarean section, weighing 4lb 6oz. Apart from needing a little help with his breathing and initially to suck from his bottle, in the neo-natal unit he was a beautiful, perfect little boy with loads of hair and the biggest blue eyes you have ever seen. Billy had to spend two weeks in neo-natal where the amazing staff taught me how to handle him and feed him as he was so tiny.
But thankfully he was discharged home healthy and feeding well. I was overjoyed.
The First Seizure
Arriving home from hospital we quickly settled into a round of feeding, changing nappies and bathing, like any other mummy. I was so in love with my wee boy, making sure his wee tummy was full and he had clean clothes, bathed every night and of course, loads of mummy cuddles.
The night of December 6th, 2005 is when our lives changed forever. Our whole world was turned upside down when my little boy took his first seizure.
It was around 11pm, Billy was sleeping in his crib beside my bed. I was awake and reading a newspaper. Out of the corner of my eye, I noticed Billy was lying with his eyes open and staring but not moving. I quickly jumped out of bed and immediately picked him up and sat him on my knee. He stopped staring and burped. I thought, ‘ok, he has wind’. After cuddling him for about five minutes he went back to sleep, so I laid him back in his crib and got into bed and continued reading the newspaper. Ten minutes later, again I noticed out of the corner of my eye, Billy’s eyes wide open and staring and he wasn’t moving.
Again, I jumped out of bed and picked him up, but this time the staring continued. I started to rub his back, thinking it was probably wind again. He burped again. I continued to cuddle him on my knee, watching him intently. Billy was awake at this stage, so I decided to take him downstairs and get him a drink of water. Downstairs, I laid Billy in his day crib and went into the kitchen to get him some water. I was literally away for two minutes but when I came back to pick him up, Billy was again laying, staring, but not moving.
I quickly picked him up, thinking this is not right. I picked up the phone and rang our local hospital. They said, ‘bring him in and we will check him’. I immediately put Billy in to his car seat and headed to the hospital. it was just about a mile from our house.
Arriving at hospital, I explained to the nurse what had happened. She checked his saturations, and sounded his heart, and said, ‘I can’t find anything unusual’. But just as she was about to leave the cubicle, Billy went still and started to stare again. I called her back and said ‘look, this is what he has being doing’. She called the doctor, but by the time the doctor came, Billy had stopped. These little staring moments he had were only lasting about 30 seconds. But the doctor suggested, as he was a premature baby, and he had displayed the strange behavior in front of the nurse, he would send him on to the main hospital to be observed overnight. I agreed, as something in my ‘mummy tummy’ was telling me, something wasn’t right with my little boy. Mummy’s Gut Instinct!
As we were getting into the ambulance to be transferred to our main hospital, Billy started staring again, but this time, every part of his wee body was convulsing – his wee face was bright red, like a tomato! The paramedic in the ambulance quickly took him from my arms and placed him on the bed, ripping Billy’s clothes off. Billy’s whole wee body was bright red and the paramedic shouted at the driver, ‘blue light, quick as you can, Go! Go! Go!
I felt totally helpless, powerless, shocked and scared all at the one time. I had not got a clue what was happening to my little boy.
Two paramedics worked on Billy throughout the 50 minute journey to our Main hospital – one on the phone all the time to doctors there. My little boy was in great distress, the paramedics putting needles into his arms, hands, oxygen on him! All I could do was sit and watch helplessly, my heart pounding, wondering was my wee boy going to die?
Arriving at our main hospital, the paramedic ran through the doors with Billy in his arms. I was running right behind him, straight into the cubicle where there was a full medical team already waiting. A nurse approached me and asked me to wait outside. I didn’t want to, but she insisted, telling me the medical team have to do their job and that she would keep me informed of what was going on.
She showed me to the waiting area. I sat down, and I was totally numb and so very scared for Billy. Thoughts were rushing through my head – what has happened to my little boy? did I miss something in him; is he going to die? God, it was just horrific! The pain in my chest, I couldn’t breathe. I just keep staring at the double doors to the room where they had taken Billy, waiting for them to open and for the nurse to tell me Billy is ok.
An hour later – what seemed to be the longest hour of my life – the nurse came out and explained to me that Billy was in a Status Epileptic Seizure, and the doctors were trying desperately to get it stopped. She would keep me informed.
I had heard of Epilepsy and seizures, but to be honest I had no idea, no idea whatsoever what they were!
I continued to sit in that waiting room. Another hour passed, then three hours had gone, then five hours. The lovely nurse kept coming out and keeping me updated. She told me that the doctors were still working on Billy, they were still desperately trying to stop the seizure. By this stage I was thinking the worst – was my wee man going to survive? I knew he was not in a good situation.
Eventually, just over six hours after Billy went into the Status Seizure, the nurse came and took me in to see him. Billy’s tiny wee body was lying in this big bed, you could hardly see him for all the wires – lines going into his arms, oxygen mask on his wee face, machines on each side of the bed. I was completely shocked at the scene in front of me. Was my wee boy going to be ok?
The doctor explained to me that Billy had a Status Seizure, one of the worst he had ever seen in a four month old baby. He explained that he got it stopped, but only after administrating several rescue medications. He said that it didn’t look good for Billy. He was stable now, but not out of the woods. There would be two nurses appointed to watch him and he would be admitted to the ward.
Tears filled my eyes, I couldn’t take in what the doctor was telling me. All I wanted to do was pick my wee boy up and give him the biggest snuggle buggle ever and keep him safe. My heart was breaking for Billy.
Ending Billy’s Life
Throughout three days in our main hospital, the seizures continued. Absence Seizures, Aaronic Seizures, Generalized Seizures, Grand Mal Seizures. They just kept coming. Battering his wee body and leaving him like a lifeless doll. Looking back now, I’m not sure whether it was the cocktail of anti-epileptic drugs he was on that were contributing to the seizures getting worse. Billy was then transferred to Royal Victoria Hospital, Belfast where we spent a further 14 weeks. Billy was given various Anti-Epileptic Drugs – iPhenobarbital, Topiramate, Vigabatrin, Zonisamide, Epilim, Lamictal, Sabril, Topamax, Tegretol, plus many more – to try to control the seizures. He was taken to Intensive Care and his wee body shut down. A machine was doing the breathing for him in an attempt to try to stop the seizures, but to no avail.
By week eight of Billy’s 14 week stay in RVHB, the clinician who was looking after him started to talk to me about ending Billy’s life. He was proposing that he be allowed to insert a line into Billy’s arm connected to a Morphine Driver. He said Billy could lie on my knee and slowly Billy would go to sleep and that would be it. He went on to explain that there was no hope for Billy. They couldn’t get the seizures controlled and most likely Billy was not going to survive. That the best course of action would be to end his life.
He asked me would I donate his brain to research. He further explained that I could bury his wee body and then 6/8 weeks later they would release his brain and then I could have it back and bury it with his body. I was on my knees asking the clinician for a second opinion. There had be somewhere I could take Billy. I begged the doctor – what about London, GOSH? Europe, America? He informed me he had already sent Billy’s medical file to a professor in London at GOSH and she was of the same opinion, Billy was going to die!
It was only 18 months later, when UTV Insight did a documentary on Billy that the professor in London at GOSH revealed she had received no correspondence from the doctor in RVHB on Billy case. He had never sent Billy’s medical notes and asked her medical opinion.
Billy given 6 months to live
Home to Die
By March 2006, after a 14 week hospital stay, dozens of anti-epileptic medications – I lost count of how many were tried and failed – Billy was discharged home to die, given no longer than six months to live. In the doctor’s own words ‘he won’t see past his first birthday’!
With a heavy heart I took my wee warrior home. What should have been a happy time, getting him discharged from hospital, was a mixed emotion time for me. I wasn’t sure if he was going to survive and if so, for how long.
But home I took my wee warrior, carrying him constantly on my hip, hoovering, washing, etc. He was constantly in my arms, being snuggled. Even when I went to the toilet, Billy was on my knee. The fear of me leaving him in the room while I used the toilet was very real and, in my thoughts,, he might take a seizure and die and if I were using the toilet in another room I would miss it. Seizures continued every day, anything from 40-50 per day and status every 7-10 days, requiring Billy to be rushed to hospital via ambulance and doctors to frantically work on him for hours to stop them.
He slept beside me every night. I snuggled him in beside me. I bathed him, massaged him. His big blue eyes looking up at me, the wee smiles between those brutal seizures. My wee warrior was telling me he was fighting for survival, he wanted to live. Like a tigress protecting her cub, unbeknown to myself, I was willing Billy to live. Ii was beginning to understand when my granny said to me, many years ago ‘never underestimate the power of a mammies love’.
Research and Fundraising/ Professor Nordli
When I would get Billy to sleep at night, I would sit trolling the internet. Googling Epilepsy, Seizures, etc.
I printed off article, after article on the word Epilepsy.
My kitchen became invaded by epilepsy printouts, Epilepsy books, work tops were covered in articles. I ate the word Epilepsy. Realizing knowledge was power, I needed to learn as much as I could about this brutal condition that had overtaken my little boy’s body and brain – this brutal condition that could take his wee life right in front of me, in a split second. I learnt medical terms I never knew existed, learned about anti-epileptic medications. Some of their names I could not pronounce. I became a mum on a mission to save my little boy. I went to sleep reading about Epilepsy, I dreamt of seizures, conversations with my family and friends only were of interest to me if that’s what they were about. I didn’t want to have a conversation about anything else. I became totally obsessed with seizures. I was not going to give up hope on Billy.
Through many months of research, I discovered RVHB had not done the appropriate testing on Billy to determine if he was going to die. Nor was the doctor treating Billy qualified to treat such a complex case of Epilepsy. The doctor was a neurologist, everything to do with the brain. Billy needed an Epiltoligist, an expert in Epilepsy.
After many months of searching I found a highly recommended Pediatric Epiltoligist in Chicago, Professor Nordli.
I sent all Billy’s medical records to him. He agreed to see Billy.
I set up a fundraising campaign – Billy’s Ray of Hope.
The cost of treatment in Chicago for Billy was going to be huge, but I was determined. Billy was nearly two years old by the time I had all this done. He was still here, still very much alive, even though he was continuing to have many seizures and on a cocktail of anti-epileptic medications – five in total that were not controlling his seizures.
Myself, Billy and my older son Kyle left for Chicago in September 2007 full of hope.
The first week we were there Billy underwent numerous tests. None of which were carried out by Doctor at RVHB.
After seven days of testing, I asked Professor Nordli if there was hope for Billy? With a smile on his face he answered ‘yes, there is, yes their is’. I cried many happy tears that day.
Professor Nordli started immediately to wean Billy off all his anti-epileptic medications, apart from one and got him on a Correct Ketogenic Diet. RVHB had already prescribed the diet for Billy but had him on an incorrect ratio.
Sixteen weeks went by and Billy had NO SEIZURES! I was elated.
Professor Nordli had saved my little warrior’s life. I was so very thankful.
But due to the 100s of seizures and the cocktail of anti-Epileptic Drugs Billy was on, now at the age of two years old, Billy could not hold his head up for any longer than about one minute, he couldn’t sit on his own, could not hold a toy or crawl or walk. He was lying in his buggy completely depleted, drooling from the side of his mouth.
Now that we had the seizures under control, let’s get this young man into Intense Physio Therapy, Professor Nordli recommended. Let’s see what we can tease out of him?
Billy was enrolled in an intense physio therapy program at Pathways Center in Chicago.
There for two years, Billy’s beautiful, patient therapist Miss Daisy taught him how to sit, crawl, stand and walk.
I was one very, very proud Mummy. By September 2009 funding for Billy’s treatment in Chicago was running low. I found a Doctor and a Physio Therapy Centre in Oxford on the same level as the one in Chicago. We relocated to Oxford and spent a further 18 months there.
On March 2011, we returned home to our own country.
My wee Warrior was walking, running away from me when I was trying to wash his face or get him to clean his teeth.
Billy’s seizures remained in remission, apart from the odd one popping up now and again.
Thankfully, our life returned to some sort of normality. Billy still needed to be supervised 24 hours per day as the 100s of seizures his wee body had to endure and the cocktail of drugs he had being prescribed had left him with considerable brain damage, hence severe developmental delay.
Charlotte, Billy’s older brother Kyle , Billy and the amazing Dr. Nordli
Billy enjoying an incredible 50 days seizure free
Billy was diagnosed as Autistic in February 2012. Billy is non-verbal, apart from Mum and Boom. But can communicate very well by using facial expressions, which can be quite comical sometimes. He frequently seeks out time alone when overloaded by other people. Billy likes to spin objects, especially my saucepan lids. When I go to cook dinner, I have to first of all go on a hunt for my missing lids as Billy normally has them in toy room or garden. All traits which have become part of his wee character and who he is.
2016 Mr. Seizure Returns
After eight years of a relatively seizure free life for Billy was nothing short of a miracle.
Sadly, in June 2016, the seizures returned and this time they were back with a vengeance – stronger, longer and more frequent.
Every single seizure required a rescue med to stop it and oxygen.
I desperately tried to seek an urgent medical review for Billy in our own country and Oxford. But due to long waiting lists and the refusal of doctors to see him, I was left with no other choice but to return to the care of his savior, Professor Nordli, who now was practicing at a Children’s Hospital in Los Angeles.
To afford Billy’s treatment, again I set up a fundraising campaign – Keep Billy Alive – to aid me to pay for the lifesaving treatment and care my wee warrior so desperately needed.
On arrival in Los Angeles in September 2016, Billy underwent a series of tests under the care of Professor Nordli.
He discovered Billy has a Lesion on his left Temporal lobe.
Because of poisoning of the Lesion on the lobe and the fact if surgery were to be carried out, Billy might lose his memory and speech, Professor Nordli spoke to me about trying Medicinal Cannabis on Billy, to see if this would help reduce his seizures and maybe aid to heal lesion.
This was a relatively new treatment for seizures in children, and to date not a lot of clinical trials had been carried out on CBD. But it was worth a try considering the many Anti-Epileptic Medications Billy had tried before had failed to stop the seizures.
I took Billy to a Medicinal Cannabis Doctor who specializes in the use of treatment of seizures with Cannabinoids in Los Angeles.
In the first instance he prescribed Billy with CBD whole plant extract, which is very low in THC. Increased Micro dosing slowly over a period of weeks.
Scientists don’t fully understand the long term effects early marijuana use may have on children. Studies that show negative effects, such as diminished lung function or increased risk of heart attack, are primarily done on adult marijuana smokers. But Billy wouldn’t be smoking the plant.
Is Medical Marijuana safe for children?
Some people I spoke to said ‘NO, NO, NO’ and to date are still saying ‘NO, NO, NO’.
In Billy’s case we had really exhausted all avenues of treatment, one seizure can kill Billy.
I found the biggest misconception about treating a childlike Billy is a lot of people think I’m getting my son high. Most people think he is stoned.
Kyle , Billy’s brother on his 350 mile epic run around N. Ireland with Billy on his back, 4 and half stone in his rucksack. Billy’s weight
History being made:
On April 19, 2017, Dr Brendan O’Hare, Billy’s GP in Ireland wrote the first ever prescription for Medicinal Cannabis for Billy.
As medical Marijuana is illegal in Ireland and UK, this was a huge milestone.
He stated common sense prevailed – this wee boy needed the medicine that is controlling his life threatening seizures.
A huge heartfelt thank you to Dr Brendan O’Hare for doing this.
Charlotte and Billy picking up first ever Medicinal Cannabis prescription written in Ireland and UK
Charlotte and Billy 150 mile , 8 day epic walk to Hospital in Belfast
Billy May 2017
Today, nine months on my wee warrior is thriving. His seizures have reduced from 28 status seizures per month, requiring Oxygen and rescue med, to around two per month. He did have a period of 94 days seizure free. Something that hadn’t happened in months.
Not only is Billy now managing to step down one step and step up steps, but he can walk up a flight of stairs on his own, open and close doors, he shows great interest in books. His balance hugely improved and no longer requires special needs boots to support his ankles.
For many months I never heard Billy’s laughter, but recently it rings through the house. Eye contact has improved immensely, and he is so much more aware of his everyday surroundings. Social interactions with other people are improving – small steps every day. I don’t think I would have been watching the gains Billy is making and doing the things he is doing without Medical Marijuana.
I literally see Billy’s brain making connections that haven’t been made in years.
I want to scream from the rooftops and tell all the mammies and daddies, and adults that are suffering from many other life threatening illnesses that CBD maybe a viable option.
CBD has given me back the right as a mammy to hope, but most importantly it has given Billy, my wee Epilepsy Warrior back his right to life.
Feeling so very privileged, Billy chose me to be his Mum,