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Retinitus pigmentosa
stargirl80
Member Posts: 6 Listener
Hi All,
my young son whos 9 has just had a vision field check which i noticed was all centrally pin pointed, He basically ticks every box for retinitus pigmentosa. I first noticed something wasnt right 2-3yrs ago especially at night and i had voiced my concerns on every eye checkup but it was only feb this year the optician finally picked up on something and reffered him. Im not really sure what to say im just a mum worried for my sons future and what to expect i suppose.
my young son whos 9 has just had a vision field check which i noticed was all centrally pin pointed, He basically ticks every box for retinitus pigmentosa. I first noticed something wasnt right 2-3yrs ago especially at night and i had voiced my concerns on every eye checkup but it was only feb this year the optician finally picked up on something and reffered him. Im not really sure what to say im just a mum worried for my sons future and what to expect i suppose.
Replies
Welcome to our community!
Sorry to hear about your sons visual problems. This must be a distressing time for you, we are here for you to offer a hand of support and friendship
I'm 23 and I have central vision loss.
Have you spoke to your local council to enquire about the sensory support team, they come and visit you at home and offer advice and can introduce gadgets and aids to help with daily activities, worth a try
Ami
Disability Gamechanger - 2019
Hope you slept well!
Bare with me I will try to remember the tests I had so that if your son has the same then you know what they are and what happens during the test. All of them were painless so that's a good start!
My sensory support worker gave me a support cane (white stick), a Daylight lamp to make reading easier, a big digital clock, games and puzzles which were enlarged to let me enjoy them. Have you asked what types of toys and games are suitable which he can enjoy?
Ami
Disability Gamechanger - 2019
becca 😊
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The tests I had were:
- A standard eye tedt
- Cover test - where one eye is covered and you stare at an object, then vice versa.
- Ocular motility test - to see if the eyes can follow a movingly object.
- Retinoscopy - a doctor asks you to stare at an object whilst shining a light in your eye.
Slit Lamp Test - measures the structure of your eye, you put your head against a rest and your chin on a rest and the doctor uses a microscope/magnifier with a light to look in the eyes.
- Glaucoma Test - This is completely painless, this is to measure the pressure of the eye, it involves a small puff of air being blown into the eye, it does look like the instrument goes into your eye but I assure you it doesn't
- Pupil Dilation - Eye drops are used to make the pupils dilate giving the doctor a better picture on the eyes internal structure. Drops take anything from 10-30 mins to take effect.
- Visual Field Test
When I think of the other tests I had I will let you know
Hope this helps
Ami
Disability Gamechanger - 2019
Whilst you might worry for your son, it’s worth understanding that people with RP can play many sports and work full time for many years and into the blind years. Indeed I’ve worked with several people who have done exactly that. The biggest thing you can do now is to understand the condition itself and how it will progress so you can talk him through that when you feel it’s appropriate. However, it’s not appropriate to keep the basics from him. Not only will you not be forgiven for that, you will also find it will be crucial in avoiding things like bullying.
It’s also worth asking him exactly what he can see right now so that you gain some insight but can also check in on him periodically to see how quickly it’s progressing. It’s very difficult with children for parents to separate personality from visual impairment. Parents often think their child is lazy, clumsy, rude or far too easily tired and label those things as personality traits when they may be entirely down to the VI.
In terms of aids and appliances there’s no one size fits all and you really will need to talk to him to find out what he’s okay with and what he’s not. I know a child who’s perfectly comfortable with an iPhone torch. The idea of a day light would horrify them. Similarly, foisting a cane on a child without long talks about the why and how will be counter productive. Ditto shop bought magnifiers.
He needs a low vision assessment, which will give you a better idea of some of the aids available but it’s also worth talking about registration as ophthalmologists are reluctant to talk about it because they see it as something to do once all else medical has failed rather than something to do straight away.
I would not think about DLA until such time as you have a clear picture of what his vision is and can seek advice on a claim locally. I’m a manager within a welfare rights service and kids DLA claims are a battle. When you’re getting used to his VI and his emotional needs it’s a battle too far no matter how much you need the money if entitlement is not actually straightforward.
There’s a long conversation to have with school but be aware they will resist an EHCP for as long as they can because they know it will commit them to ongoing costs such as an iPad to access white boards; large print reading materials and so on. To that end you’ll want to read about IPSEA as soon as possible. School is an ongoing fight in the sense that what you have sorted for one year will fall apart the next and so on. The best way you can tackle this is head on. Don’t trust promises and do/confirm everything in writing. Do not cut them any slack at all.
Finally, when the moment is right, introduce him to other children with RP or with VIs. They’ll find much on common; learn a lot and have a laugh. Start with the RPFightingBlindness charity.
Hope that helps a little.