Retinitis Pigmentosa

[hazeyjane]

Does anyone know of early signs - I know that tunnel vision and problems with night vision are part of it, but anything that would be noticeable if your child were to be in the very early stages?

Also is it something a standard eye test at a high st optician would pick up?

My dd2 was tested for this last year. Slightly different circumstances because she is deaf & I was warned to look out for the signs as there is a syndrome that links the two.
The advice I was given was that the first sign would be struggling to see in the dark, watching tv or falling over things. Average age of starting symptoms is around 7 or 8.

I can't help with the optician question because I got a referral direct to paediatric opthalmology & then GOSH via GP.

At the hospital they looked at her eyes for pigmentation - it was a visual examination. Later on they did this awesome test to do with brainwaves and reactions to a screen test.

I'm not sure of UK organisations, but there an excellent charity in Ireland, www.fightingblindness.ie which might be able to point you in the right direction.

Yes, usually we would see a pattern of pigmentation at the back of the eye. Please mention it if it is a concern.
With deaf children we'd look for signs of Usher's syndrome.

There are other conditions that can cause tunnel vision and poor night vision.

The test that @Muddlingalongalone mentioned is a VEP test - Visual Evoked Potential. It's a really useful diagnostic tool when kids are small and unable to give verbal feedback.

Thank you.
Ds has a genetic condition and on the Facebook page for the condition a couple of children have recently had a diagnosis of retinitis pigmentosa, one of the mum's contacted me as our children seem to have very similar medical profiles.
Ds used to be under the hospital ophthalmologist, because he has ptosis in one eye. They discharged him and he now has an eye test at a high street optician. His ptosis isn't pronounced enough to cause problems and although he is slightly long sighted, there haven't been any other issues. He was last seen in June, and she said to come back in 18 months. With this new information, I wonder if I need to ask to be re referred to the hospital, to ask for specific tests?

Have you noticed any night vision deterioration OP?

If you're worried go back for another eye exam and ask them to re-examine the back of the eye. The initial signs of the condition are not that obvious, but there are a couple we can look for. The test you need to be referred for at the hospital is an ERG and that can spot very early signs of the condition.

Is it daft to say that it is hard to tell?! Ds has a speech disorder part of which means he finds it hard to tell us if he is in pain, or what he is upset about etc. He also has issues with low tone and gross motor skills so things like clumsiness could be down to that.
I am speaking to his gp on Monday about another matter so will ask about a re referral to opthalmology.
Thanks everyone.

Hazey - not at all. I don't think even my NT DD would be able to tell a night vision deterioration.
You may struggle though to get a referral based on no signs or symptoms. If you PM me your son's primary diagnosis, I could have a look for a connection or at least give you something that may warrant a referral.