Each of the nine children’s stories was written especially for the Nystagmus Network by John Sanders, who has nystagmus himself. http://www.nystagmusnet.org/Shop.htm

Joshua was 5 weeks old when we first started to notice his eyes were moving in a pendular fashion and that we were not able to get eye contact from him. At his 6 week check I pointed this out to our G.P who at the beginning of the appointment thought I was being an over anxious mum but by the end had decided that maybe there was something to worry about and said he would refer him to a specialist. I of course being a new mum came home very worried and was constantly trying to test Joshua’s vision, for example trying to get him to track objects/light but had no response. After a week of anxiety I rang the doctors for an update and learnt that the referral letter had not even been written, I of course went into a state of panic and decided to take matters into my own hands and take him to A and E to try and get answers. I really did not know what was causing the movement and was worried my baby may of had a seizure or something awful. I was so glad I took him they took me seriously and I stayed overnight with Joshua so they could perform tests and see specialists. We were told that he was not suffering from a brain injury and that it was just his “eye’s”.

Hmmm just his eyes not as reassuring as I would have liked although obviously pleased that he was appearing to be developing normally. The ophthalmologist used the word his “NYSTAGMUS” which stayed in my mind. As we left I quickly started to research it on the internet as we were given no information or literature on the subject at all. We were told it would be a long time before we knew how much he could see/ if at all. Unfortunately it was a waiting game.

After researching Nystagmus on the internet I quickly learnt this was not a condition that was going to go away or be “fixed” which broke my heart, all I wanted was for the best for my new baby and this looked as if it had been taken away from him.

In summary Nystagmus is an uncontrolled movement of the eyes, usually from side to side, but sometimes the eyes swing up and down or even in a circular movement. Most people with nystagmus have reduced vision. For more information please visit our Nystagmus page.

For the next couple of months it really was a rollercoaster of emotions and hard work. We were trying to stimulate his vision as much as possible and were constantly showing him high contrast/black and white pictures, only had high contrast toys and even had black and white pictures around his changing table and cot. We found ourselves constantly testing his vision using lights and pictures and desperately hoping he would track them. I think he was around 4 -5 months old before we saw him do so, and the relief was great.  Since that moment he was showing signs that he was seeing more and more and although he would still have struggles we were relieved he wasn’t blind and could see more than we thought.

It took about a year before tests could rule out any other underlying conditions that may have been causing his Nystagmus, such as Ocular albinism, cone dystrophy and cataracts. He had 3 sessions of electro diagnostic testing and many appointments with his specialist to check his eyes were developed as they should be. He was finally diagnosed with Idiopathic Congenital Nystagmus (early onset Nystagmus) which again was a relief he had no other problems causing his wobble.

I think one of the hard things about being a new parent with a child that has Nystagmus is the constant comments and stares you get from ignorant strangers when out and about. We had many upsetting times, I remember when one woman came up to me in the street and told me my baby looked drunk. People also feel the need to constantly tell me that he is soooo tired and needs a sleep, another popular comment is that he is really looking around isn’t he? Joshua is 2 and a half now and only last week i walked into a shop and the assistant stopped her conversation with a customer to tell me that he looked very bewildered. At first i was so upset by them all but i soon realised that i had a gorgeous baby and i was proud of him and didn’t let it bother me. Although sometimes people still do make me angry.

The most important bit of advice I could give a new parent is make sure you do not forget to enjoy your baby! They are only babies for such a short time and it is precious. Although after a diagnosis it is a very worrying and anxious time try not to let this over rule you. I do however think it is very important that you do all you can to research the condition and even become an expert in it yourself as this can help give your child have the best possible start!

“ a term used for spontaneous oscillations of the eyes. The most common form of nystagmus in young children is congenital nystagmus (also called infantile nystagmus) occurring at birth or in the first few months of life.”

The following are excepts taken from Mike Hughes blog which you can read here

“Nystagmus is an involuntary movement of one or both eyes. Statistics are not definitive but it appears to affect between one and two in a thousand people.

Nystagmus leads to a tendency to turn the head to one side in order to find a null point where the shake is at its least and focus is easier. Often it’s that turn that creates problems rather than the nystagmus itself.

All there was to remind me of my nystagmus was the occasional discussion with someone to the effect that I couldn’t see something because, well, because I couldn’t see it, and yes, I was looking where they were pointing! It was just that my head wasn’t.

Retrospectively of course I can now see that my lifelong struggle to read the handwriting of other people was not just a minor foible. It was simply the case that someone with nystagmus can struggle to focus for long enough to discern the difference between a, o and e and probably some other letters too in the same way that we often struggle to work with a Snellen chart when forced to look at it through lenses that don’t allow for our null point

Sport in general is a struggle for anyone with nystagmus. Maybe I am just not very good at sport but over the years I have learnt that whereas I have absolutely no chance of participating in squash I can get by in a game of table tennis. Same size ball you may be thinking to yourself. So what can be the difference? Well, in squash it travels a much greater distance and requires constant refocusing. In table tennis it might move quick but it requires very little refocusing. It moves over a much smaller distance. This might not apply to everyone but it certainly applied to me.

One of the things that sitting in a darkened cinema did clarify for me was a specific side effect of having a null point. This was the moment I realised that, I prefer to be on the left!

What I mean is that my null point is apparently ten degrees off centre to the right so I turn my head to the left. Interestingly, this means that no matter what I am doing I prefer to be on the left hand side. I suppose this is logical but it manifests itself in very odd ways. I am never comfortable sitting immediately behind the driver. Now I know why! I prefer to sit slightly to the left of my PC screen. I prefer to sit slightly to the left of centre in the cinema and even when I am sat on a sofa I find myself preferring the left. I suspect I would have problems with Feng Shui!

The RNIB stuff suggests that sitting to one side somewhere like a classroom is of no assistance and can lead to a crowding effect in whatever you’re looking at. This is logically undoubtedly true. All I can add is that, in my case, it has always helped. It may be a false positive or a placebo but placebo is a very powerful and much misunderstood thing.

Oh, did I mention the nodding head thing? People with nystagmus often have some kind of nodding head syndrome whereby they are unconsciously in a constant battle to correct their wobbling eyes. Combined with the struggle to make and keep eye contact it makes social interaction a battleground occasionally rather than a pleasure. “Surly” rather than “concentrating much harder than you could possibly imagine”!

At work I really couldn’t function when my eyes were tired as the shake worsened and made the slowness to focus much worse. An understanding that this really did mean taking the regular breaks experts demand we take from our computers. The need for natural but indirect light i.e. not in my face as the eyes water and the attempts to stop this actually bring eye function to a halt for quite a while. In the absence of natural light then really strong artificial light. You’d laugh if you saw my house on this latter point. If I was following this to the letter then I’d move the study into the toilet.

Then we have the stuff around font sizes. Make it big and I won’t strain. Keep it small and, until this year, I would rarely complain (I am a very, very slow learner but I do at least stay learnt!). I will oblige by simply squinting around six inches from the screen. Yeah that works!

Did I mention I struggle with strings of zeroes? Have to turn them vertically to read them. Probably just as well I’m not a millionaire. I wouldn’t be able to keep up! The RNIB suggest that spreading out or separating long strings of digits can assist – using commas is the most obvious thing – but personally I’m good when there are lots of zeroes with or without commas, at least I think I am, up to a thousand. It’s when the numbers get bigger and include zeroes that it all goes wrong, commas or not.

Heading to work I have a choice of two buses. One is a double decker and fast. The other is a single decker and takes a circuitous route. I generally prefer the latter as, however enjoyable the working week may be, I don’t want to rush there, and, I get more reading time too. So, heading into work in the light Summer months there’s really no issue. I can’t read the bus numbers until the bus is virtually upon me but I don’t need to.

Coming home is slightly different. Again, light Summer months, no problem but, as the mornings and evenings go darker, it becomes increasingly harder to distinguish between buses. When it’s light I can wait at the one bus stop which has about five different buses stopping there because I can relatively easily identify mine from a distance.

As the light grows dimmer though through Autumn and into Winter I have to move to the bus stop around the corner where only two buses stop. The latter are single deckers but generally easily distinguished as being from two different companies. Granted the latter stop has no shelter but that could applies to anyone using it, and to the network in general, not just me.

I think this is nicely illustrative of nystagmus. The above is a small thing. A tweak to my routine and no more, but, I do have to think about it. The world of someone with nystagmus is full of such small adjustments. Thus my comment earlier about the disproportionate effect. Small things add up and pervade every aspect of your day. It’s often just a matter of capturing and defining your routines but it still has to be done.

As a child i’d had headaches. I now know that it was when my eyes were over-tired. I adapted seamlessly and unconsciously then by becoming an indoor, bookish sort of child minimising physical exercise. I also used to fall asleep in cars quite a lot as the headaches started. Now I understand that was because even the effort of watching the world go by for an hour out of a car window requires an amount of focus that can easily wear you out. Focusing on a book or something in the car instead was no less of an issue

So, you can see that nystagmus pervades almost every aspect of my life but all the things I have described are in themselves small negatives. There is nothing that say the parent of a newly diagnosed child should feel anxious about. It takes some thought to manage it, and emotional and physical support in areas of life that really aren’t obvious unless you understand the practicalities, but I got by even before I gave it that thought and acquired that understanding. I just get by better now. Hopefully the resources and personal stories like this one that are now available will go some way to informing of the many issues and convincing others that they can do the same.

“The term hypermobility means ‘more movement’ and describes the over flexibility of the joints. Hypermobility syndrome (HMS) is an inherited condition in which the protein, collagen, which makes up the supporting tissues and gives the body its intrinsic toughness, is more flexible than usual. A person’s joints are lax because they have inherited looser and more brittle connective tissue, particularly their ligaments, tendons, joints and muscles. This makes the joints more mobile, sometimes unstable, thus more prone to injury. Some children may have more severe problems that may lead to subluxations (excessive movement of the joint) or dislocations. The degree of difference, and hence tendency towards painful symptoms, varies from individual to individual, even in the same family.

HMS is a composite term bringing together all the various difficulties that may arise in people with hypermobile or lax joints. It is probably more correct to refer to the hypermobility syndromes (in the plural) as a family of genetically based conditions which differ not only in the particular protein affected, but also in the degree of difference of formation. At one end of the spectrum are the diseases with potentially serious complications such as Marfan syndrome or Ehlers-Danlos syndromevascular type (formally EDS IV) see entries. At the other end of the spectrum are what is now called, on good evidence, the benign joint hypermobility syndrome (BJHS) or Ehlers-Danlos hypermobile type (formerly EDS III). These may cause troublesome and persistent problems but do not affect the vital organs and thus do not pose a serious threat to life. Because joints do not look arthritic, the problem is often overlooked by health professionals.”

You can find out more about about hypermobility and it’s symptoms check out the contact a family website or the hypermobility syndrome association

My 8year old son often wakes up with painful wrists and cold fingers due to the positioning he sleeps in. He now has splints but he can still bend his wrists and fingers back. They cannot give him hard splints as he has hydrocephalus amongst other issues and they are concerned he could bash his shunt whilst he’s sleeping. Attached is a photo of his hand whilst asleep.
My 3 year old has poor balance without his boots on as his feet tilt over so much.

I’m not sure if this is something that improves with age or whether this is how they will always be and whether it will lead to further problems later on.