From my previous post, I explained about the frustration and anger at lack of communication and prolonged waits for appointments. Forgive me as this is going to be another long winded post…
Back in early January, Rubeons eyes started to roll downwards. (Imagine what your eyes look like during REM sleep, it looked like that, only in a rapid downward motion.) Initially it started off a few times for about 10 seconds, and by the end of the day it was occurring constantly and rapidly, lasting 10-20 seconds each time with a short break of 5-10 seconds in between. Naturally this worried the crap out of me and I called my GP for a doctors appointment.
My initial thoughts were seizures, or that his shunt was malfunctioning. Once at the GP, the doctor honestly admitted he had little knowledge of hydrocephalus and Neuro problems and referred us up to PAU (the non-emergency childrens a&e.) We were seen pretty quickly, and Rubeons consultant wasn’t too worried about it and arranged for us to see him clinic in a few weeks time. So we were sent home… I recorded a few of the eye rolling episodes and sent them to Rubeons neurosurgeon in hope she would be able to help and offer advice.
The next day, (a Saturday no less) his eyes were in full rolling mode, and my gut was telling me something wasn’t right. I wasn’t happy to have been fobbed off the day before, and so I rang the children’s ward where we’d stayed for Rubeons shunt surgery. After briefly explaining what was going on I was advised to take him straight up to A&E. So I did.
Once again we were seen by more doctors, one of whom also seemed to lean towards the eye rolling being a sign of seizure activity (they obviously didn’t and couldn’t say it for sure as no testing had been done.) It was then arranged for Rubeon to have an appointment booked for an EEG, as naturally, being a weekend, half of the hospital shut down…So we waited for the appointment to come through, and amazingly it came through really quickly and it was booked for just over a week after our visit to A&E!
Leading up to the EEG, Rubeons eye rolling subsided considerably, to the point I started questioning whether I was overreacting and perhaps he was just having an “off weekend.” I wasn’t giving up the appointment, as the rational side of me reasoned that babies eyes didn’t normally roll like this… so we went, and the EEG lasted about 20 minutes. During the test, Rubeons eyes started rolling again and he zoned out. Whilst I didn’t want it to happen, a part of me was glad it did during the testing. I felt like I would now have definitive proof that something was happening and I wasn’t being a paranoid mum. I noticed during the testing, the EEG technician was focused on the screen, and every time Rubeon rolled his eyes, he switched his gaze to Rubeon – another sign that he was seeing a change of activity on the screen.
Then the waiting game started again. It was the end of January, about 2 weeks after the EEG. I had to chase the consultant up to find out the results, which at the time of calling, they had only just been passed onto them and I was told I would hear within the next few days. And so I waited…and waited…by now January had passed and it was mid/late February. Eventually I received a letter in the post, which informed me of another appointment for Rubeon to have a 24hr EEG at the end of March. Fine, I thought, but why? I was no closer to an answer and I was once again angry and frustrated at the lack of communication between the hospital and Martin & I.
Yet again, I had to chase them up to find out the reasoning behind this decision for a 24hr EEG. As it turned out, there was strange activity going on during the first EEG, which the doctor labelled as “attacks” and so a longer EEG was suggested to observe whether these “attacks” happened during sleep. And so we wait…again.
I mentioned earlier that I had recorded and sent a video across to Rubeons neurosurgeon, and they did ask for us to see them in their clinic that week to check him over physically. After a visual check and an x-ray, they were happy his shunt was fully functioning and his eye rolling wasn’t anything to do with his shunt. It was here we were then referred to opthamology.
Which brings me to my latest frustration. 3 weeks ago we went to our first appointment with an Orthoptist and ophthalmologist. Lights were shone into Rubeons eyes, they placed patches over his eyes and tried to get him to focus and fixate on objects. He was spun around in Martins arms and more lights were shone into his eyes. Nothing seemed to bother him or faze him. (At least, he didn’t show any signs of being bothered!) There wasn’t much optimism that his eyes were focusing or fixating (which we had already said.) We informed them that he reacted to sounds and looked in the direction of what he could hear, and thankfully they listened and put down the rattles! Afterwards, he then had drops put into his eyes to dilate his pupils, which would allow the doctors to look at Rubeons optic nerves.
We waited about for 20 minutes to allow the drops to work, then we went to see the opthamologist. She was wonderful! We really felt like she was one of the first doctors to actually listen to what we had to say, and she really took on board our side of the story. She looked into Rubeons eyes, and we could tell she wasn’t feeling very hopeful.
We asked her what she thought, and whilst she couldn’t say for 100% definite, (as there had been minimal testing), she wasn’t confident there was any vision in his left eye, and minimal in his right. It was to the point where she had ruled out surgery to correct his squint as it wouldn’t benefit him (other than cosmetically.) She was a lovely lady, and she made arrangements for us to see a consultant before going home as she knew we’d travelled far enough to get there, so she wanted to see if there were anymore tests that might need doing before we left.
Whilst we waited, Martin and I just sat in the waiting room taking in everything we had been told, and assumptions made.
Blind. Rubeon is blind.
It was hard to say it, but it wasn’t a surprise to me. I’ve long since thought something wasn’t right with his eyes since he was about 2 months old. I’m no doctor, let alone an eye specialist, but I knew something was off with his eyes. I don’t know what, or why I thought they weren’t right – because let’s face it, a 2 month old doesn’t do much and their eyes are still developing, but whatever it was, something made me question his sight. Having heard it from a doctor didn’t make the news any easier.
Now, bearing in mind we’ve essentially been told our son is pretty much blind, we sat in the waiting room coming to terms with this news.
We then got to see a consultant about 30/45minutes later who blew this out of the water completely! She told us that Rubeon could in fact see! Now don’t get me wrong, this news is just what we wanted to hear, but it didn’t feel right. The frustration we had with this was, for the whole 5 minutes she saw Rubeon, she jingled rattles and made noises at him – even though we had told her he looks in the direction of sound.
As you can imagine, we left feeling completely confused. Could he see? Couldn’t he see? How could two professionals have two completely different answers?? Whatever the outcome was, we didn’t care, we just wanted to know! Rubeon would still be Rubeon, eyesight or not. But how could their opinions be so polar opposite?!
We went home, angry and frustrated and confused. Our next appointment was arranged for 3 weeks time, during which time I had to put an eye patch over Rubeons right eye to encourage his left one to pull out and centre. He didn’t enjoy this to be honest! Whether that’s because he genuinely could see and I was covering his good eye up, or if because he didn’t like the patch on his face, I don’t know. I do know that the patch is kind of working though. His left eye can now centre itself for a brief second or two, at the cost of his right eye turning in…(does this mean he can see??)
Yesterday, we went back to the clinic and saw the same consultant. She remained very optimistic that she was right about Rubeons vision. I asked about two tests that could be performed called a VEP (visual evoked potential) & an ERG (electroretinogram.) These tests are designed to see if the brain is receiving the message from the eyes. I was shrugged off and was told they would be considered if there was an issue with his eyesight.
She did however book Rubeon in to have surgery to correct his squint in May. I am very grateful that he is having this surgery, I truly hope it’ll be the start of the end of our worries. We’ve also been sent home with two boxes of patches to continue using each day, and this time they’ve got groovy prints on!
But for now, I’m sat second guessing everything. I still don’t believe he has full vision, (I’ve been known to be wrong.) I don’t know. I’m second guessing every eye movement, every stare, every grab at a toy. Is he reaching for things because he can see them? Is he looking at me? Is he turning his head to accommodate for his squint? Did he follow that motion? Are the patches working? I want to believe the consultant, but a part of me still can’t get past the niggle that something isn’t right. Whether that’s because I’ve convinced myself that something isn’t right, or if my mum-instinct is on-point, time will only tell now.
I know I sound like I’m bashing the doctors and the service we’ve been getting. Honestly, I am SO appreciative of our health service. I know the waits can’t be helped. I know it’s backed up. I know they’re trying their hardest. But I still get frustrated at it all. I’m at a loss as to how we were given conflicting information. I just hope our consultant is right, and we can close this chapter and move on.
As always, Rubeon is taking everything in his stride, and blind or not he’s gonna have a cracking life, we’ll make sure of that! Next up, 24 hr EEG.
– Becky x