Leaker Profile: Cameron Goodship (Age 12)
At only four and a half years old, Cameron was diagnosed with papilledema after his optician identified swelling behind his eyes. A lumbar puncture was requested to test his CSF pressure and, following months of delays and insistence from his parents, this was finally carried out. Cameron’s pressure reading was dangerously high, and he was placed on Diamox (acetazolamide) immediately, as well as furosemide as diuretics, using the top dose recommended for a child of that age.
Cameron did not respond well to taking Diamox. He was nauseated, tired and could not join in with any activities that a boy of his age would normally do. He was constantly exhausted and spent a lot of time sleeping and feeling extremely unwell and his quality of life was minimal. As Cameron also suffers with Crohn’s Disease, the combinations of medication he required for both conditions interacted with one another and resulted in a horrible combination of side effects. Cameron stopped gaining weight and his heightened CSF pressure was not relieved.
Eventually, the family were referred to a neurosurgeon, but unfortunately the first visit was not a positive one, with the family left reeling when they were told that they weren’t sure why they were carrying out the operation: ‘He hasn’t gone blind yet!”. So the family continued to struggle until finally, at the age of 7, Cameron had a shunt fitted. It was hoped that it would provide as few complications as possible.
After the shunt was fitted, Cameron was very poorly. He went into low pressure many times, suffering the same debilitating symptoms as many a CSF leaker. Cameron reported that he felt like he just wanted to lie down, to shield his eyes from the light and to sleep. Whilst his symptoms were now different to those he experienced with high pressure, he felt much worse at times. It took a long time for his pressure to settle, in any way.
Unfortunately – yet inevitably – Cameron missed a great deal of his schooling. However, he is a bright, inquisitive child and is determined to progress his learning. He was able to catch up the schoolwork he had missed and was able to clearly demonstrate his fascination with some areas of the curriculum to his teachers. His year 3 teacher, in particular was very helpful, and had a greater understanding of the impact of low intracranial pressure due to a relative with the same condition.
Provision was made for Cameron to help him through the school day – he could have time out when required, to retreat to quiet areas or put his head down on the table as and when necessary. Sports Day was a particularly difficult day for Cameron – he recalls the heightened activity and heat causing greater symptoms than usual, which nothing would relieve.
Cameron’s friends were sadly less understanding than his teacher. As well as the horrendous physical symptoms caused by low intracranial pressure, Cameron had the additional heartache caused by the unkindness of his school peers, who had a very limited understanding of his condition and what he had been through. They teased him for being different, calling him ‘Robot Boy’ due to his shunt fitting.
A new teacher was also less understanding, claiming on occasion that Cameron ‘Only had a headache’. Thankfully, the head teacher spent time sensitively raising the awareness of Cameron’s condition that was so desperately lacking, bringing about a shift in attitudes throughout the school and replacing ignorance with kindness, respect and thoughtful interaction.
As the years have gone by, Cameron has learned to cope with his medical conditions and with school generally, with a maturity not usually seen for his age. Despite missing so much schooling, he has achieved highly in all areas – even achieving above and beyond all expectations of his year group.
Cameron is a highly intelligent, articulate boy who is learning to cope with all life has thrown at him with an honest, open mind and wonderful resilience. He does not want extra attention, he is not looking for sympathy when he is feeling poorly, he just wants to get on with his life and gain the best quality of life that he is able to.
The shunt has helped, but he still deals with low pressure symptoms with regular frequency and having coped with a total of sixteen lumbar punctures as well as surgery, he is keen to move away from this experience and lead a normal life. Cameron is also very keen to do as much as he can to raise awareness of his condition to help others understand.
He is an inspiration to us all.