Looming over us for some time has been the awful worry about B’s MRI results. Here’s a quick recap- when diagnosing my son as autistic, the paediatrician dropped the bombshell that he would need an MRI scan. His head, she told us, was on the 95th centile and therefore worth taking a closer look at. Without a doubt, this was as big a concern (at the time) as the fact that he was autistic. That is, we knew already, or strongly suspected he was autistic. I wouldn’t say we were prepared for the diagnosis or how it would make us feel, but it wasn’t a surprise. Finding out he would need a brain scan because his head was too big was a surprise. A shock.
I will never forget the day I stood in the radiology room as my son, sedated, had his head wrapped in the metal frame of the scan machine and slowly moved inside it. I remember my legs shaking as I stood watching him. The radiologists sat in their booth behind me as I watched my little boy lie there. An awful experience.
Several weeks later, when we had heard nothing, we began to relax a little. We were told that we would hear something if there was a problem. During the assessment process for B’s statement we saw another doctor who confirmed that, ‘You would have heard something by now if there was a problem’. So, with our guard down, we went along to B’s six month review, only to find that there were problems. The scan, we were informed, revealed some ‘abnormalities’ of an ‘unspecific’ nature. It would need looking into further. We should have been informed of this sooner but, for whatever reason (it’s not important now), we were not. You can read my account of this here and here.
Since then we have been referred to a neurologist and a geneticist. My head swims when I think about what this means and what seeing them might involve for my son. More scans? Blood tests? They don’t tell you much in the hospital and I am not good at asking the right questions at the right time. Usually there is a frustrated child to deal with, not to mention the fact that the wind has just been knocked out of your sails. Ahead of meeting with the geneticist my wife went to see a the ‘geneticist counsellor’. This in itself was a worry. Why do we need a counsellor? Are we being prepared for something here? As it happened, this first meeting simply involved a chat about B’s background, family history, medical records and general development. This was fine- we’re well practised in talking to medical and health professionals about our son. She explained that the information provided, along with the scan, would inform what happened next. She also hinted that she might remain a point of contact, whatever that means.
In addition to the meeting we were asked to email some photographs of my son’s head, and also some photos from when he was younger. I found taking the photos to be upsetting. He does have a pronounced, protruding forehead. It’s usually hidden away under his floppy fringe but when you look, it’s clearly… not right. Or different, at the very least. This is difficult to write about. Let’s just say that it’s enough to cause a great deal of anxiety when I dare to let myself think about it too much.
The meeting with the geneticist is still to happen, but in the meantime we have been to see the neurologist at the children’s hospital. To say I was anxious ahead of the meeting would be an understatement. I had convinced myself there would be bad news. How could there not be? Before the meeting, my wife and I took a weekend break. It was much-needed and greatly enjoyed. We both did a very good job of pretending we weren’t thinking about the upcoming meeting. Throughout this whole process I have fought against thinking too much about what is going on and what it all means. You have to, I think. But as an appointment looms closer, it’s impossible not to think about it.
After being kept waiting for ages (do these people know nothing about what it’s like for an autistic child to wait like that?) we were called in to chat with the doctor. Here we were. The moment of truth. Except it wasn’t. Despite being referred to the children’s hospital due to the scan results, the doctor had not received them. In fact, he knew nothing of the ‘abnormalities’ that had shown up. A phone call to our local hospital was made but the doctor was unable to get the scan faxed over there and then. It would be sent to him later that week, he told us. To complicate matters further, the doctor had a letter, from our paediatrician, which raised concerns about the possibility of a thing called Alexander’s Syndrome.
The doctor quickly ruled this out, and thank god he did. Alexander’s Syndrome is a debilitating brain condition which drastically reduces the child’s life expectancy. I don’t know what I would have done if our paediatrician had told us this was the reason for the referral. Actually, I know exactly what I would have done. I would have immediately googled the condition and then had a nervous breakdown. I would have read about the symptoms and effects of the condition, and despite the fact that my child did not show any of these signs, I would have convinced myself that he would be diagnosed with it. It would have been the end of me being about to cope, I’m pretty sure.
The doctor told us that ‘abnormalities’ in MRI scans are quite common and that the white matter in the brain can cause rogue results. Given my son’s development, he felt that there were no signs of concern and he certainly did not have Alexander’s Syndrome. We left the hospital feeling relieved. At the very least I thought they would say they needed to carry out more tests. Instead, we were told that there was no suggestion of anything more sinister. My son had, I think, been given the all clear.
Now, a few weeks later, I feel a little more uneasy about the whole situation. It’s not the ‘all clear’ is it? The doctor didn’t even see the scan results. Why were we told there were abnormalities and then told that there were not? What the bloody hell are the hospitals playing at? In addition, we still have to see the geneticist in December. When the scan results have reached the children’s hospital, and the doctor has taken a look at them, we will be written to. He estimated that this would take three to four weeks, so I expect to hear something in the next week.
Yesterday, a letter arrived addressed to ‘the parents of’ our son. My hand shook as I opened it and I realised how much those awful fears are still there. It was nothing more than a reminder about our appointment with the geneticist, but I was scared as I tore open the envelope. I’ve let my guard down before, thinking everything was fine. I can’t leave myself open to that again. I know, logically, that what the doctor says is probably right. We’ve effectively been given the all clear, but there are some unanswered questions. We still have to meet the geneticist and I wouldn’t be surprised if that opened up a whole other can of worms. We may yet face further tests and god knows what else.
In the meantime, we are just getting on with things. B continues to be a happy little boy and is making progress. Sitting down to write this brings many uncomfortable feelings to the surface but I know that in two minutes time I will be wiping up a spilt drink or having a cuddle or burning toast or any of the other things that make up our typical days together. I often think that, despite our use of ‘Now and Next’ cards, my son has little concept of ‘next’. I think he lives pretty much in the moment, and that moment is usually quite a happy place. I’m off now to join him in that moment.