The beginning of our Journey…A Parents Perspective
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!
At the time we create and wrote this blog entry Joshua was 2 and a half years old and coping brilliantly, developing well and enjoying every moment of life. He obviously has some struggles but it is better than we could have ever wished for.
We decided to create NystagmusBlog to help new parents understand what they could face in the future or just to hear similar stories. When suddenly faced with having a baby/child diagnosed with Nystagmus it can feel very lonely and it really helps to network with other families.
This blog is a diary of key times in ours and Joshua’s lives that could be affected by Nystagmus. We hope it will provide information and resources as well as help and support to other families.