Retinitus pigmentosa — Scope | Disability forum
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Retinitus pigmentosa

stargirl80
stargirl80 Member Posts: 6 Listener
edited July 2018 in Sensory impairments
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. 

Comments

  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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 :)
    Disability Gamechanger - 2019
  • saxgirl
    saxgirl Member Posts: 21 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
  • stargirl80
    stargirl80 Member Posts: 6 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? ?
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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 :)
    Disability Gamechanger - 2019
  • stargirl80
    stargirl80 Member Posts: 6 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_Scope
    Richard_Scope Posts: 3,176 Scope online 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 and Cerebral Palsy Programme Lead

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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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 :)
    Disability Gamechanger - 2019
  • riversong1
    riversong1 Member Posts: 4 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 
  • stargirl80
    stargirl80 Member Posts: 6 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.  ?
  • stargirl80
    stargirl80 Member Posts: 6 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! ?
  • stargirl80
    stargirl80 Member Posts: 6 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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