I’m Desperate To Know What’s Wrong With My Son, But The Doctors Can’t Give Me Answers

The pain in Carter’s head is so bad he sometimes loses consciousness, but medical professionals can offer no solutions. His mother is sharing their story in the hope of finding help.

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It would be great to write a story with a neat and happy ending, but sadly I can’t do that. At this moment in time we are still searching for answers and hoping for a breakthrough that means my darling seven-year-old son gets the treatment he needs. To say the past 30 months or so have been a roller-coaster is an understatement.

Carter was a perfectly normal, healthy kid. He was full of character and had plenty of energy to run around with his twin brothers, Liam and Jaxson, who are two years older than he is. When he was younger there were some issues with asthma, but nothing his paediatrician couldn’t help us control.

Then, in September 2016, everything changed. It started with a routine eye exam for all three boys – I always took them at the start of the school year. Our usual eye doctor wasn’t available, so I called around to find someone who could fit us in. He noticed Carter’s optic nerves were swollen and said we should see a specialist to find out what was going on. I followed his advice, and got Carter checked out.

Carter has endured countless lumbar punctures – so many, he can’t have any more as the holes in his spine no longer close.

Two days later – September 20, a date I’ll never forget – I got a call to bring Carter to see an eye specialist. “I’m sorry,” she said, after she examined him. “I know you don’t want to hear this, but it looks like he has a brain tumour. You need to get to Sick Kids [The Hospital for Sick Children in Toronto] right away.”

And that’s how it all started. The endless appointments, hospital visits, tests and procedures. Carter has endured countless lumbar punctures – so many, he can’t have any more as the holes in his spine no longer close. The cerebral fluid leaks out and he becomes unconscious.

You might wonder why he needs to many tests, but the thing is, he doesn’t have a brain tumour. After an MRI scan showed there was no mass, we were told it must be leukaemia instead. An equally frightening prospect. Then those tests came back negative too. We were told ok, so it’s meningitis. But again, that was ruled out.

Finally, we were told: “I’m sorry, but we just don’t know.” The only diagnosis they could give was that Carter had a pseudotumor cerebri – essentially, a fake brain tumour, when all the symptoms are there but without the mass. It’s also known as IIH – idiopathic intracranial hypertension. It’s most common in obese women of childbearing age, but it can occur in children and adults too.

Carter’s body isn’t playing by the rules and they can’t figure it out.

I struggled to make sense of it. So Carter gets this awful pressure in his head, but his cerebral fluid levels don’t increase? How does that happen? Especially when he is otherwise healthy. All the doctors can tell me is that usually this would go away on its own after a few months. But we’re still here, two-and-a-half years later. Carter’s body isn’t playing by the rules and they can’t figure it out.

Liam and Jaxson are worried about their brother and terrified they’re going to lose him. I have to be there for them, too, offering as much strength and comfort as I can. Times like these are when life as a single mom gets really tough.

I look back now at the day I was told Carter had a brain tumour and realise that wasn’t the worst news I could have been given. At least we’d have known what was wrong, what we were up against, and they could have figured out how to deal with it.

Instead, Carter has to take countless medicines to keep his symptoms in check – the headaches, the blurred vision, nausea and vomiting, tinnitus, lack of coordination. The list goes on, and Carter has had them all.

The doctors have told us they’ve never seen another child present in the same way, and they have no answers

He gets terrible headaches, so bad he’s in tears with the pain. He’ll clutch his head and cry, then fall down unconscious. They’ll wake him from a sound sleep. He’s even been hospitalised a few times – they are that severe. Sometimes he can’t stand up. He’ll forget who I am, where he is or what’s happening. There have been several occasions when I’ve had to rush him to the emergency room.

I’m tired of hearing “Let’s wait and see”, “We just don’t know”, “Let’s try this medication” and “We’ll try this test/monitor him for this”. The doctors at Sick Kids have told us they’ve never seen another child present in the same way as my son, and they have no answers.

We thought there was some light at the end of the tunnel when we were told of a procedure called venous sinus stenting. The stent is placed in the brain to widen narrowed veins and it can alleviate IIH. It’s been carried out successfully with adults, but just two other children have had the procedure. Unfortunately this was ruled out as an option after an MRI showed the vein they would have to operate on was too compressed. A VP shunt isn’t an option as Carter doesn’t have increased fluid on the brain, so there’s nothing to drain away.

As a family, our happiness is fading and we are worried and anxious.

With that flicker of light now extinguished, we are back at square one. No answers. An increasing number of medications to help ease Carter’s symptoms, while we “wait and see”. And all the time, my son’s vision is getting worse, his headaches are getting worse. As a family, our happiness is fading and we are worried and anxious.

Is there anything else we can do? Anywhere else we can look for answers? I will do anything I can to help my baby get better, but right now I just don’t know where to look and it’s breaking my heart.

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3 COMMENTS

  1. Hi Lisa,
    Thanks for sharing your story. Please look into Lyme disease. I am co-founder of LymeHope (www.lymehope.ca) and happy to answer any questions. You can reach me at sue@lymehope.ca Please note the current Canadian test for Lyme is abysmal, many children who have an infection are negative on Cdn test, and require specialized testing in US or Europe – a Western Blot or Elispot.

    Please note there is peer reviewed literature showing on Lyme and pseudotumor cerebri
    https://www.ncbi.nlm.nih.gov/pubmed/4067752
    https://www.ncbi.nlm.nih.gov/pubmed/2912121
    https://www.ncbi.nlm.nih.gov/pubmed/9650688

  2. Hi there,
    I really don’t know much myself, I wasn’t going to comment due to my lack of understanding, but something told me not to leave without mentioning… I once watched a documentary on “suicide headaches”, or “cluster headaches” which they know little about or how to treat, and the effectiveness that psychoactive substances can have on them. It might be something worth looking into

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584001/

    Best of luck to you both! I really hope that you’re able to find a solution soon