Meningitis in your words

Mahwish Mustafa's story

  • Location: UK
  • Categories: Bacterial meningitis
  • Age: Child 6-12
  • Relationship: Child
  • Outcome: Full recovery
  • After effects: None
MahwishMustafa - Meningitis in your words
Mum of three and social media influencer, Mahwish Mustafa, supported her young son, Ali, after he contracted meningitis just a few months ago. Despite the challenges of his condition, all signs suggest Ali has made a full recovery.


Several months ago, my son was diagnosed with meningitis, and it marked one of the most challenging times for our family. We had recently moved from the UAE to England, and even though my kids were fully vaccinated, including Ali with the Pneumococcal vaccine and booster, he still contracted the disease.  


It all started innocently with a headache during their spring break. While playing in the backyard, Ali suddenly came inside, complaining about the headache. Initially, I gave him a paracetamol and used a vapor rub on his forehead, thinking it might be a mild ailment. However, his condition worsened rapidly, and he developed a high fever and a severe headache at the center of his forehead. He began vomiting, unable to keep anything down, not even water.  


Concerned, we took him to the doctor who suspected a viral infection and prescribed paracetamol. Despite giving him the medication, the situation deteriorated further after three days. Ali's headache intensified, and he could not sleep at all. It was agonizing to witness his pain, as he was moaning and couldn't even close his eyes properly. We immediately sought medical attention, and after noticing his stiff neck, drooling, squinting, blabbering, and weight loss, the GP promptly referred us to a specialist at the nearest hospital.  


The journey to the hospital was filled with worry and anxiety. Upon arrival, doctors admitted him and immediately started administering steroids, antibiotics, and fluids through multiple cannulas. Ali was in immense pain, and his inability to sleep for two days only added to his suffering. The doctors explained that his brain wasn't functioning properly, causing him not to close his eyes. They used eye drops and tapes to help him rest his eyes, but even under the wet towel at home, his eyes remained open.  


As the medical team continued to treat him, it became apparent that meningitis was the cause. To confirm the diagnosis, they performed a lumbar puncture, but his neck stiffness initially made the procedure challenging. A CT scan was done before the lumbar puncture, and eventually, they managed to take the necessary spinal fluid samples. This procedure was painful, just like when I had an epidural during my first caesarian. So I could relate to his pain.  


Another complication arose when they had to administer medication through a stent in his left arm due to swollen hands from previous cannulas. Conducting this procedure without anaesthetic was necessary because of the seriousness of his bacterial meningitis and his high CRP infection rate that was 317. The normal rate is 0. The fluid obtained from the lumbar puncture confirmed that it was indeed meningitis, but they needed to investigate why he contracted it despite being fully vaccinated.  


During his hospital stay, Ali experienced a severe headache similar to when the symptoms first appeared at home. This prompted the doctors to order another CT scan that revealed fluid accumulation around the outer layer of his brain. It was concerning, and they immediately contacted neurosurgeons at Addenbrookes hospital to assess the situation.  


We were informed that if there was an infection in the fluid, major brain surgery might be required, which was a devastating prospect for us as parents. Ali was transferred to Addenbrookes hospital the same night, and the ambulance ride was filled with fear and unease. The confined space, lack of windows, and clattering tools only added to the distress.  


Upon arrival, the doctor advised us that Ali couldn't eat or drink before an MRI, as anaesthetic might be needed. The night before the MRI was the longest, and he was restless, unable to sleep. The doctors gave him morphine to help him relax since regular painkillers weren't effective. During the MRI, childcare experts used Lego models, YouTube videos, and sounds of the machine to help Ali through the process without anaesthetic .  


Fortunately, the MRI results showed no infection in the fluid, and the doctors were relieved to send him back to the local hospital. Ali had to stay for another week to complete his antibiotics. During this time, he made progress, with his eyes returning to normal and regaining movement in his neck. Physiotherapy helped him regain strength, and he began eating lightly solid food, walking around the bed, and performing daily tasks with assistance.  


However, fever spikes became a concern during the last week of his hospitalisation. The doctors suspected the cannula and stent might be causing the fever, but removing them didn't lead to significant changes. They considered drug fever and stopped all medications for 24 hours to assess the situation. Daily showers and light clothing helped, but the fever spikes persisted. 


The doctor suggested to have another MRI scan to check the rate of fluids around the brain. The report was not much different. But the doctors said its nothing to be worried about. It's because of the inflammation and this is causing the fever sparks. 

Despite the challenges and hardships, we are immensely grateful that our dear boy fought through it all with such courage. He has been through so much, but his strength has inspired us all. 

The doctor discharged him with instructions for regular check-ups, daily monitoring, and blood tests. Ali's resilience and bravery throughout this ordeal amazed us. During our stay at Addenbrookes hospital, a doctor specializing in children's immunity took our family history and conducted thorough tests. Recently, she informed us that Ali's immunity results came back normal, providing reassurance that there's nothing to be worried about. 

The unfortunate reality was that Ali had contracted a strain of meningitis that wasn't covered by the vaccine he received in UAE, which is same in the UK. Meningitis has over 90 bacteria strains, while the vaccine only covers 13. It was just a stroke of bad luck. 

I lost the count of blood tests he had and the injections. His nerves were so punctured that the last day doctors weren't able to pull out the blood from the syringe. 

Despite the challenges and hardships, we are immensely grateful that our dear boy fought through it all with such courage. He has been through so much, but his strength has inspired us all.

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