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Retinitus pigmentosa

stargirl80stargirl80 Posts: 6Member 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. 

Replies

  • Ami2301Ami2301 Posts: 5,160Community champion Disability Gamechanger
    Hi @stargirl80

    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 :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • saxgirlsaxgirl Posts: 21Member Connected
    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. 
    I'm listening
  • stargirl80stargirl80 Posts: 6Member Listener
    Hi thank you for replying, i've got to wait for appt at London GOSH  before im able to put any help together for him, i've made the school aware and his senco is really supportive. I haven't told him yet as i dont want to freak him out as what he sees at the moment is normal to him. If you dont mind me asking ami what support do you have in place and visual aids/support help you? im just looking at the bigger picture and want to help him the best i can when the time comes? 😊
  • Ami2301Ami2301 Posts: 5,160Community champion Disability Gamechanger
    Hi @stargirl80

    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 :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • stargirl80stargirl80 Posts: 6Member Listener
    He could probably do with a daylight lamp as he puts the light on in the kitchen at 1600 so he can do school work. He cant see if we go out and its dark he has to hold onto someone this is when i first noticed that something wasn't right. I will ask more questions at his next appt in September.
    becca  😊
  • Richard_ScopeRichard_Scope Posts: 1,533Administrator Scope community team
    Hi @stargirl80 ;

    Welcome to Scope's community! It's great to have you here.  Just to get you started we have a How To Guide here, you can see all the latest posts here, jump in and get involved and don't worry we are a friendly bunch!  
    If you need anything, just let us know. 


    Scope
    Specialist Information Officer - Cerebral Palsy
  • Ami2301Ami2301 Posts: 5,160Community champion Disability Gamechanger
    Hi Becca,

    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 :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • riversong1riversong1 Posts: 4Member Listener
    Hi I have ret pig in my family both my dad and his a brother totally blind from it and his dad we were told it did not occur in females yet my son has just married a young lady who may have ret pig my father was totally blind from the age of 24  and lead a full life not every body with this goes totally blind but there is a chance that he will go blind there is not much they can offer in treatment as off yet and if he has it any children he has will have to be gene tested as its usually a faulty gene passed genetically through family he may need a guide dog but has my father found that is some thing you have to fight for  and may not get.. ...Any way if my daughter in law does have this my grandsons will have to be gene tested and that is going to be soul destroying if they have it.. .Good luck for his future 
  • stargirl80stargirl80 Posts: 6Member Listener
    hi ami, wow thats alot of tests! thankyou for letting me know about these some ive not heard of. He has another test in sept but im not sure what they are going to be doing.  😊
  • stargirl80stargirl80 Posts: 6Member Listener
    hi riversong1 thankyou for replying, we dont know anyone in our families that have ret pig noone on my side wears glasses, i have a younger son so will get him checked out as soon as possible! 😊
  • mikehughescqmikehughescq Posts: 3,384Member - under moderation Disability Gamechanger
    edited July 2018
    The tests for RP are fairly standard because they’re about detecting abnormalities in downward gaze, peripheral vision, light perception, colour perception and so on. RP can start as early as 5 and as late as 35 but the end game is total blindness or NPL (no perception of light). You should request a genetics referral which will involve no more than a family tree and some blood tests but will help rule out things like Ushers and give you some more pieces of the jigsaw. 

    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. 
  • stargirl80stargirl80 Posts: 6Member Listener
    wow thankyou for the advice thats really helpful. We are going to sit down and tell him when hes been properly diagnosed with RP and i know everything i can to make it easier for him to understand what will happen because at the moment what he sees is normal to him as i have asked what he can see and he looks at me as if im weird to ask that question but he does and he says in 9yr old words "i can see in front of me and thats it" I want to keep things as normal as possible for him at the moment without freaking him out. The school are being kept up to date and are starting to put measures in place and the senco was contacting a VI specialist for advice for ehen he returns to school. This was only picked up on his routine eye check end of february so just awaiting appointments. 🙂
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