I mentioned in a few posts back about my third child, my 3 month old baby.
I noticed a problem with his eyes when he was around four weeks old. Firstly his pupils were always enlarged and then his eyes started to move around and around, not stopping.
At his six week check, his eyes were going left and right almost all the time of his waking hours.
I had done some research and came across a condition called nystagmus.
http://www.lowvision.org/nystagmus.htm
The GP mocked me when I asked her to look at his eyes. She said it was a rare condition and would not be very likely. This mocking was soon replaced with an "hmmm" followed by her saying she too thought it was nystagmus.
It was not as bad as it has now become however.
Unfortunately in my area, babies are not allowed to be referred until they are nine months old, and then on top of that is a ten month waiting list.
As I had read that brain tumours are linked to vertical nystagmus I was worried. Worried because his eyes now moved vertical as well as horizontal.
I took him back to the GP a few weeks later as I was now concerned that he was not able to see.
The only way we would be seen by a specialist she said was if we went private.
So we did.
What choice did we have? Risk our baby's health? Let the NHS make his eyes worse with no early intervention?
He has now been seen by a paediatric ophthalmologist and had several electro diagnostic tests carried out.
They concluded that his nystagmus is the rarest form - up and down (vertical) left and right (horizontal) and corner to corner (no idea what they term that as).
Most nystagmus babies and children have only one presentation which is usually the horizontal.
Thankfully, he does show signs he has some vision. To what extent we will not know as of yet, but his brain responded to the flashing images when he was wired up to the machine.
So now I have gone sensory toy mad for him.
His cot is a little multi sensory gym, with bold black and white patterns in every direction so that wherever his eyes are flicking to, he will have something there to stimulate him and his brain.
I also find myself singing out loud around the house, so that he always know I am about, even if he cannot see me.
His problem is amplified when I see my two friends who had babies of nearly the exact same age ( 7 days and 1 day older than W).
Their babies engage you with their eyes when they see you in the room. They follow objects and try to gain attention by looking at you.
My poor W cannot do this.
Going back to the brain tumour risk...
We are waiting for an MRI scan.
Again privately as it is not available on the NHS until after the referral and being seen by a specialist ( so around two years of age then - most helpful).
The risk is not high, the P/O told us, but it is a possibility.
So, I now have two children with special needs.
Is it a wonder I wander around in a daze so much?!
