Dancing eyes – a very rare syndrome

As is my style I am sharing again my experiences with readers, in the hope that if you are a parent or teacher you can relate to some degree or find information which may be of some benefit to you personally or professionally.  

Once in a while I come across a syndrome that is really rare. This week was such a case: yesterday in fact. The little girl’s father informed me that Dancing Eye syndrome (DES) is rare:  one in ten million to be precise – is that rare or what? By sheer statistics I will not meet a case study like this one again.

Dancing Eye syndrome can have one of two different causes: it can be a result of neuroblastoma, a cancer in the brain, or it can be a virus, which attacks the central nervous system. In this particular case it was a virus. It happened that around Christmas time a couple of years ago the little girl suddenly became ill and developed a fever and within a short time she collapsed, unable to walk, had quite lost her balance and her eyes had this characteristic ‘dancing’ effect, with uncontrollable random movements. 

The little girl is three and a half years old now. I did not see on my visit any evidence now of ‘dancing eyes’; fortunately her medication has completely controlled this. She is now permanently on steroids and she is able to walk and sort of run. She still has poor balance however and that was clear. I was informed by the parents that going up or down stairs is still a great challenge.  What I did see was a wonderful little child with lots of curiosity and interest in what is going on around her. In many ways she is a normal little girl who can speak and play quite age-appropriately. She said my name perfectly with very good diction.

The little girl’s visual acuity is actually pretty good now. She is 6/12 (20/40) with the Cardiff Cards (0.3 LogMAR), which is more or less normal. She has a squint in her right eye, a convergent strabismus, which is not too pronounced. And she is slightly long sighted in both eyes – about +1.50, (better than me!). So she wears glasses for hypermetropia (that’s hyperopia for you across the Pond). No patching suggested, but a possible operation later is offered for the squint. Her hearing is good.

I thought her fine motor skills were good. She held a fork and pronged food to put into her mouth. She played well with her toys and used her fingers appropriately and accurately to pick things up from a table or floor.

However she is presently quite vulnerable to germs and viruses, as her immune system is suppressed. Mixing with other children in a nursery would be tricky until the immunity issue is sorted out. And also still being unsteady may be risky in a busy environment like a nursery or school. So there are questions about future schooling, whether it should be home schooling and so on. The levels of the steroids in time hopefully can be reduced.  

So what advice would I give for those caring for such a child? If she attends a mainstream nursery or school I would suggest the following, purely with respect to her levels of vision:

        In view of her right squint, she will benefit from

• Extra practice with fine motor skills to develop her 3-D compensatory skills. Activities such as drawing, threading, stacking will help her develop these skillS, which are already there but can be improved.
• While not being monocular and still having good functional vision in the right eye, she does have a slight degradation of vision in her right eye and this should be considered in respect to her seating and with adults working alongside her.
• Adults approaching her should be aware that she sees better on her left side and has better visual field on the left side. People should approach her from this side and adults working with her should sit on the left side. 
• She may benefit from being encouraged to turn her head to the left to see more clearly. 
• Because the glasses also help to correct the squint she should wear them as much as possible. 

Because of her mild long sight

• She will need to wear her glasses consistently for accessing books and texts. They will need to be regularly cleaned. She will also benefit from having a spare pair of glasses kept in the setting (if possible) in case of damage to the spectacles
• In view of her mild long sight she may benefit from large print texts presented close to her face.

Apart from the above and in view of her visual needs alone I do not envisage any other need to adapt her environment, curriculum or learning materials beyond these minor modifications. There are significant other needs such as lack of balance which can be caused by poor vision (or disruption to the inner ear balance mechanism). However I understand that in her case this is caused by a disorder of the central nervous system and is not directly related to her vision. I do not intend to comment on her other needs as they are outside of my professional expertise. If she is home schooled some of the above will still apply. 

As always I would also  suggest the parents contact the support network for this syndrome as it is really helpful to talk to other parents facing similar challengies. Click HERE