Daniel’s CSF Leak Story

When a headache wasn’t just a headache and you’re a 14-year-old sporty lad!

That lad is Daniel, who lives in Fife with him Mum & Dad, Jenn & Anthony, his older brother Reuben and pets Lottie the dog and Loki the cat! 

Daniel's Mum Jenn, tells his story.....

It started with a headache

When Daniel first became unwell, there was nothing about it that immediately suggested the journey we were about to go on. Daniel had been at football training on the Monday evening as usual. His rugby training had just finished for the season the week before, and normally he trained two evenings of football and two evenings of rugby each week.

On the Tuesday evening, he went out with his friends for a cooling dip in the local river. This wasn’t the original plan. They had intended to go to a local wild swimming loch, which was staffed, but it had closed for the evening. I wasn’t particularly keen on the river option. There had recently been a fire nearby and I was concerned about what toxins might have entered the river system. They went anyway.

Daniel remembers jumping into the river and hitting both feet on the riverbed. There was no pain associated with it, and at the time there was nothing to suggest that this would be significant.

On Thursday morning, he woke up saying that his head was very sore. Being the mother of two teenage boys, my initial response was fairly predictable: he was going to school anyway — he’d be fine. An hour later, I got a call from the school asking me to collect him. By the time I arrived, he had started vomiting, and he continued to vomit all the way home. He immediately went to bed and slept. At first, we naturally assumed there would be a straightforward explanation. Headaches happen. Children become unwell. Tummy bugs happen in big schools all the time. Twenty-four hours and he’d be fine. Except Daniel wasn’t getting better.

During those first 48 hours, it became increasingly apparent that this wasn’t just a bug. For a start, he had no temperature. As a parent, you don’t necessarily know what the medical explanation is, but you do know your child. And I knew something was very wrong with our boy.

The diagnostic odyssey

What followed was a period of uncertainty that was, at times, incredibly difficult. Our first visit to A&E was on the Friday evening. I had been unable to get a GP appointment and, after describing Daniel’s symptoms, I was advised to take him to A&E. No imaging was offered. Sepsis, concussion and meningitis were ruled out and we were told that a virus was probably the explanation. Daniel was given an anti-sickness injection and we were sent home.

Between 29 May and 17 June, we went back and forth to doctors, trying different medications for migraines and sinus problems. Nothing worked. An optician also reassured us that there was no swelling behind his eyes. During this period, Daniel had his first paediatric referral. He was given an MRI of his brain, along with an ECG and cardiogram. Everything was normal. But Daniel’s symptoms continued.

And there was one feature that remained incredibly consistent: He was fine when he was lying down. As soon as he was upright, things changed.

On 18 June, we saw another GP who suggested that there could be a neck or spinal issue — perhaps even whiplash. The following Saturday morning, we took Daniel to an osteopath. He was, rather unceremoniously, sick on arrival at the practice. The osteopath also queried something “odd” about his neck and upper back and suggested that we take him for an X-ray to check his neck and spine. That evening, we returned to A&E.

I was told, rather dismissively, that if there was something wrong with his spine, he wouldn’t be able to walk. Daniel was admitted to paediatrics again and given strong antibiotics while they continued trying to work out what was going on. By this point, I had started looking for answers myself.

Finding the possibility of a CSF leak

I turned to ChatGPT for some help, initially questioning things such as vertigo and migraines, and then specifically asking about a postural headache.

I work with AI tools in my office, so I knew that the information and prompts I provided needed to be specific. As I described Daniel’s symptoms and the fact that his headache was dramatically affected by his position, ChatGPT started raising the possibility of a spontaneous CSF leak.

I started researching and thankfully found the CSF Leak Association’s website. The more I read about the symptoms, diagnosis and treatment, the more convinced I became that this possibility needed to be investigated.

I began using what I was learning to formulate questions for Daniel’s medical teams. I wasn’t trying to diagnose my son or tell doctors how to do their jobs. I simply wanted to understand whether a CSF leak could explain what we were seeing.

Each time, I was told it was very unlikely. But having the information from the Association gave me the confidence to keep asking.

France, Red Bull and one more opinion

Despite everything, we somehow managed to take Daniel and his friend on holiday for a week to stay with my parents in France. By this point, we were following the guidance we had found around spontaneous intracranial hypotension as best we could. Daniel was particularly pleased to discover that, under the guidance we had found, he was allowed to drink Red Bull! While we were in France, I took Daniel to see my parents’ doctor for another opinion. I raised the possibility of a CSF leak. He nodded. “Yes,” he said. He told us that they could arrange an MRI with contrast there, or that, when we returned to the UK, I should go straight to A&E and ask for one. I didn’t want to disappoint him by explaining that the UK doesn’t quite work like that. But he wrote us a letter to take to our GP, which gave us something else to push with.

“Prove me wrong.”

On 10 July, we were given an outpatient paediatric appointment at 10am. By this stage, I had made up my mind that I was not leaving the hospital without an MRI with contrast being arranged. I’d packed an overnight bag. By 6pm that evening, a consultant paediatrician came to see us and explained that a neurologist in Edinburgh Sick Kids, with whom they had been consulting, had advised against a second scan. We were devastated. I kept saying: “Prove me wrong.”

Nothing else had been diagnosed. If CSF leak wasn’t the answer, then I wanted that possibility ruled out too. I pleaded with the consultant. Daniel pleaded too. And incredibly, a conversation with a neurosurgeon became the turning point. Suddenly, we were re-admitted to hospital. Daniel’s bed was positioned so that his head was lower than his feet. Red Bull was approved, and he was to remain in that position for as long as he could manage while we waited for the MRI with contrast on the Monday.

Finally, an explanation

You watch your child struggle while, at the same time, being told that the investigations aren’t showing anything obviously wrong. And yet, as his mum, I couldn’t shake the feeling that there was an important piece of the puzzle missing.

And then came the moment we will never forget. The consultant practically ran into our room with the results. Daniel had a spontaneous spinal CSF leak.

The scan showed features consistent with intracranial hypotension, including brainstem slumping, crowding at the foramen magnum and minor pachymeningeal thickening. It also showed two perineural cysts at T11 and T4, which were regarded as the likely suspects for the leak. They didn’t prove me wrong.

I remember hugging the consultant in tears and thanking her for finally listening to us. I also remember thinking: Ha. I need to find the A&E consultant who mocked me. Petty? Yes, probably. But the relief of finally knowing what was happening very quickly turned into anger that it had taken so long to get there. I now know, heartbreakingly, that compared with many people’s experiences, our journey to diagnosis was actually very quick. But when you’re watching your child suffer, every day feels like an eternity.

Having spent so much time researching the condition, reading stories and learning about diagnosis and treatment, finally having an explanation was almost surreal. A diagnosis doesn’t magically make your child better. But it gives you something you have desperately needed throughout the journey: An answer.

After weeks of uncertainty, we finally understood that Daniel hadn’t simply been experiencing an ordinary headache. There was a physical reason for what he was experiencing.

The blood patch

Daniel was transferred from Fife to the Royal Hospital for Children and Young People in Edinburgh for specialist care. It took three days for the neurosurgeon who had given us that crucial second opinion to find an anaesthetist willing to perform a blood patch on a child. Daniel was 14 years old, 61kg and 5ft 10 — certainly more adult-sized — but he was still a child. He underwent the blood patch on 16 July.

After 47 days, eight GP appointments and 12 nights in various hospital wards, it took just 17 minutes for the procedure from start to finish......Seventeen minutes.

After everything we’d been through, it was extraordinary. For us, this became the moment when we could finally hope that the story might be changing. But recovery wasn’t simply about leaving hospital and forgetting everything had happened. Daniel needed time. He needed reassurance that he was going to be okay. His mental health had suffered terribly. He had missed a month of school and, by the time he was recovering, had effectively lost his entire summer holiday. It was incredibly hard for all of us.

The moment we realised he was better

Four weeks after his blood patch, we took Daniel to football training for the first time. His team and coaches had been incredible throughout the whole ordeal, supporting him and showing him so much love. I will always be grateful to AM Soccer for that. That evening, I stood watching him. At first, he moved slowly and cautiously. Then something changed...

He started running, jumping about and then playing. And suddenly he looked like an animal experiencing its first taste of freedom. I had tears in my eyes. It was overwhelming — and I couldn’t stop grinning. His coach messaged me later that evening to say that he had felt the same.

That first session completely floored Daniel. I think he was shocked at how tired it had made him too. Since then, he has slowly been building his fitness back up, returning to training and matches at his own pace. One of the strangest things about a long medical journey is how ordinary recovery can feel. After so much worry, you find yourself almost waiting for the next symptom.

But gradually, Daniel was simply…...Daniel again. And that was huge.

Looking back

Today, I am just so relieved to have our teenager back. The teenager who complains that he’s constantly hungry. The teenager who wants lifts to see his pals. The teenager who needs runs to training and matches. Things I never would have grudged doing before — and certainly won’t grudge doing now.

It is strange to think that something which began with what seemed like “just a headache” could take us on such a journey. And perhaps the biggest thing I have realised is that this isn’t necessarily a one-time “blip”. It is an area where there is still so much to learn, particularly when it comes to children.

One study of 24 children and adolescents with spontaneous intracranial hypotension found that 23 presented with an orthostatic headache.

It is rare in children, but it still happens. And that matters.

I hope sharing Daniel’s story helps another family recognise that they aren’t alone — particularly if they are still somewhere in that awful space between knowing that something is wrong and knowing exactly what it is. Having reflected on our journey, I want to help raise awareness and encourage questions to be asked earlier about CSF leaks and spontaneous intracranial hypotension.

Daniel doesn’t want to talk about his journey at the moment, and I completely understand that. We cannot underestimate his anger at losing his fitness, his summer and so much time with his friends. He is incredibly lucky — and we know that — and he has recovered and will continue to recover.

But right now, he is happy for me to be his voice. So that’s what I’ll do. I’ll tell his story. I’ll ask the questions. And I’ll fight for other children and families who might find themselves sitting where we were. Because sometimes the hardest part of being ill isn’t the diagnosis.

It’s getting to it — one GP, one consultant and one question at a time.

What the experience changed for our family

A CSF leak didn’t just affect Daniel. It affected all of us. There was the practical side: hospital stays, time away from work, disrupted routines and the constant logistics of looking after a child who wasn’t well. But there was also the emotional side — the worry, the fear of missing something or doing something wrong. Were we doing enough? Too little? There were also times when Daniel asked whether this was it for him. That just made me promise him even more certainly that I would fight for answers and for him. And that’s what I had to do.

I also had to try to remain positive for him, my husband and our other son, even when I was frightened myself. My husband did an incredible job of keeping our house, pets and family life going, while also bearing the brunt of my exhaustion and occasional exasperation at having to explain, yet again, why or what was happening. Then came the fury of not being listened to and having to fight for someone to prove me wrong. Mentally, I think I spent those eight weeks running entirely on adrenaline and in fight mode.

The exhaustion and relief didn’t really arrive until the night I watched him train for the first time. I think one of the biggest things this experience changed for me was how much I trust the phrase:

“You know your child — and fight to be heard.”

I’m not suggesting that parents should diagnose their children, but I do think parents should feel able to say: “This isn’t normal for my child, and I don’t think we’ve found the answer yet." And keep asking.

What I would say to another family

If I could go back to the beginning of Daniel’s journey and speak to another parent sitting where I was sitting, I would say this:

Trust your instincts. 

Ask questions — lots of questions.

Don’t be afraid to say that something doesn’t make sense.

A CSF leak is not necessarily the first thing anyone will think of when a child presents with a headache, and I certainly never expected it to become part of our lives. But recognising that something wasn’t right — and continuing to look for an explanation — ultimately mattered.

There were frightening moments. There were many, many frustrating moments. There were moments when I wondered whether we would ever get an answer. 

But there were also incredibly positive moments: meeting people who listened, finally having an explanation, seeing Daniel recover, and eventually being able to look back and realise just how far we had come.