Laura & Harry’s story: How medical cannabis changed Harry's life

Can you tell us about Harry’s health journey so far?

Harry was born premature and had a pretty traumatic birth. The umbilical cord was wrapped around his neck three times, and there was a worry that he might have been deprived of oxygen, but actually, once he was stabilised, everything seemed to be okay.

That was until he turned five years old, when he suddenly developed tics. This was in 2009, and at the time, Tourette's syndrome was still somewhat misunderstood, even in the medical field. I was actually working for the NHS still in 2009 and had done a huge amount of research myself, so when the doctors told me, "It can't be Tourette's because Harry isn't swearing", I already had an understanding that only around 10% of people with Tourette's actually tic in that way.

It took a little while, but after a few months working with the paediatrician, Harry was given a diagnosis of Tourette's syndrome. He was given a prescription for some pharmaceutical drugs and was started on a small dose. But, just a few months into treatment, in January 2010, Harry had a massive cardiovascular collapse caused by the drugs.

That's where it really all started.

Over the years, Harry developed a range of neurodevelopmental issues. He was originally diagnosed with atypical autism, but that is no longer considered a formal diagnosis. Harry struggles with sensory processing, some moderate learning disabilities, and issues with executive function. He also has been diagnosed with ADHD, along with hypermobile Ehlers-Danlos syndrome.

Eight years (and so many doctor appointments) later, we finally got a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), which comes with a huge range of potential symptoms. For Harry, initially, the worst symptom was bouts of extreme muscle tremors, but he also started to faint regularly. Even if Harry was at school, I couldn't be more than about a 15-minute drive away because when he fainted, it would take hours for him to properly recover.

That was it, up until about 18 months ago when Harry started vomiting most days, sometimes multiple times a day. 

He called me one evening while I was at work, telling me that he couldn't stop vomiting and that it looked like there were coffee grounds in his vomit. I knew straight away that this could be a sign of internal bleeding and that we had to get him seen by a doctor immediately. I left work and we got him to an out-of-hours GP, who sent us up to the A&E.

This was a complete disaster all in itself. It was getting quite late by the time he was finally seen and admitted, but at midnight, I was told that I would have to leave. I assumed they had a care plan in place for him, for them to look after him, but they really didn't. I woke at 5 am to a call from Harry saying that they had discharged without letting me know, and that he was sitting on the pavement outside the hospital all alone. There was no follow-up by the A&E doctors at all.

So, back to the GP we went, and we have been back and forth with different doctors ever since. He has been given endless referrals to see NHS doctors, but it's so hard to get appointments and even more challenging if you're dealing with more than one condition. He was also referred to the POTS clinic in London, but we were told that it would take up to two years for him to be seen.

But Harry was still being sick every time he ate, and we were at a point of desperation where we really couldn't wait another two years.

And before arriving at medical cannabis, what treatments did Harry try to manage his symptoms?

The biggest issue that we have been facing in the last 18 months is the nausea and vomiting. Harry is tall, 6 foot 2 inches, but he only weighs 72 kg. He was barely eating because he had zero appetite, and anything he did eat just came straight back up again.

The doctors kept prescribing him anti-sickness drugs, but most of them had no positive effect, or worse. 

He was even put on Metoclopramide, which is normally reserved for cancer patients suffering from the side effects of chemotherapy, but he was only allowed to use it for one week due to the potential side effects.

So, really, anything that the doctors gave him to help with the vomiting didn't work or couldn't be implemented into his treatment plan long term.

We were really at the end of our tether. We had been to the GP so many times and were just being sent back and forth between different departments, with no real answers or solutions, or being told to wait for appointments that could take years to come through. We were ready to try anything that could possibly help Harry and give him some relief from his symptoms.

I have always been proactive about doing my own research, and had already seen that medical cannabis could be prescribed to people with Tourette's and ADHD. I looked into medical cannabis for POTS, and there seemed to be some good evidence that it might help. 

I spoke with Harry about it, and we thought, "Well, we've got nothing to lose, really". After looking into all the major private medical cannabis clinics in the UK, we found Releaf and read a bunch of reviews, which were all super positive. We signed up, and here we are.

How has the process been so far, and has medical cannabis helped manage Harry’s symptoms?

It was a little tricky to begin with because we had to sign up with Tourette's syndrome as the main condition, as this is the health issue Harry has been most medicated for. But once we got over that first hurdle, it has all been very smooth.

From our first appointment with Dr. Michal Modestowicz, he has been absolutely amazing. After we explained all of Harry's health issues, he made it very clear that he wanted to treat Harry holistically and not focus on a particular syndrome or condition.

Dr. Modestowicz spent a lot of time with us, going through all the different symptoms that Harry was experiencing and asking us lots of questions. He then recommended that Harry try two types of medical cannabis flowers and one medical cannabis oil.

Like most new patients, there was a period of trial and error before we found the right dosage and types of medical cannabis that worked best for Harry. The oil didn't really make much of a positive difference to Harry, but I think that's because of the way Harry's brain works. He needs to feel an instant effect, and the oil takes a little bit longer to kick in. That's been the same thing with any medication he has ever taken.

But the medical cannabis flower has been amazing.  As soon as he started vaping the flower, he stopped ticking, which was amazing. He really calmed, and he suddenly focused. He's so much more engaged. I was like, "Wow, where have you been?"

He is sleeping so much better, which has made such a difference just generally. He also noticed that if he was starting to feel sick, as soon as he vaped the medical cannabis flower, the nausea would stop, and it also would stop him from vomiting almost immediately. It has also helped boost his appetite - perhaps not as much as I would like, but it's allowing him to eat so he's able to function.

In a nutshell, that's where we are at now. He's been transformed by it. Obviously, it's not got rid of his problems, but we've got it to a point where we control his issues so much better. Before medical cannabis, we were struggling to control anything really.

Wow! And what kind of difference has that made day-to-day? 

It's small things, also—things that, from the outside, might not seem that significant but are just huge for us. I came home from work one day within the first couple of weeks of Harry starting with medical cannabis, and there was a brand-new kitchen roll on the kitchen wall holder. To be honest, that surprised me because that just wouldn't have been on his radar before. I know that might sound really small, but it was a big step for us.

And then we started noticing how much it helped in other ways

He's much more engaged with people now. Harry has never been much of a conversationalist, but now he finds it much easier to chat and laugh.

With his ADHD, he has always found it quite difficult to focus for longer periods. Before starting with MC, the last time I remember him actually sitting through a movie was with 'Toy Story' when he was about four years old. Now, we can sit and enjoy an entire film together, and even TV shows. I have introduced him to 'The Inbetweeners’, and it is really nice to be able to share that kind of thing with him, and laugh together. The fact that it helps reduce his tics so much, I think makes a huge difference for his ability to focus for longer periods.

But, in terms of day-to-day life - he's sleeping better, and he's able to eat. Wow, that's huge!

He was also struggling with his studies, because of how ill he was. But he is at college now, studying for a BTEC in IT, and we are really hopeful that will translate into a job further down the line.

Have there been any other positives to come from Harry’s medical cannabis journey?

Yeah, actually, there has been one that kind of took us all by surprise.

My mother has been struggling with a few different health issues for the past few years, and when she saw how well Harry was doing with it, she decided to give it a go herself. She is also a Releaf patient now. 

Watching Harry help my mum set up and use a vaporiser is not something I ever thought I would see, and it's actually really sweet. It is the first time that he has been able to teach her something, and they have really bonded over it and have something in common. If she gets stuck with anything or a little confused by the process, she'll phone Harry and say, "How do you do this? And how do you do that?"

As a parent, you always want your child to be able to help others, especially their own family. And it has been lovely to see Harry be able to do that for the first time.