High Myopia toddler

[sebbiesmum]

My son is 3 next month and when he was about 15 weeks old was diagnosed with X-Linked Nystagmus which is now almost undetectable. We did notice though he kept bringing things right up to his face so recently took him back to the consultant/hospital opticians where he was diagnosed with Rapidly Progressive Myopia with a prescription of -9 in both eyes and +2.75 astigmatism.
We would NEVER have thought it was that bad. I'm worried sick that he's going to go blind as they've referred us (for the 3rd time) for Electro diagnostic testing to rule out retinal dystrophy and we've also just had genetic tests done last week. He doesn't have any developmental delays and we're back next week for another eye test since getting his glasses.
I just can't shake this feeling something isn't right as most visual issues associated with nystagmus are due to the "shaking" which he doesn't have. Does anyone have any experience with this? Or have any reason his myopia is so high if his nystagmus is so mild? It all seems so rare and google is a scary place when you're worried about something.

Hi Sebbiesmum, my son (15) also has very high myopia. He was a -10 when he was 4, so about the same as your son. He is now -24 and is considered visually impaired due to progressive myopia. However he is managing well with glasses. He got his first pair at 1yr old. When does your son get his glasses?

Thanks for replying Orange32. He got them a month ago now and he seems to be doing well with them, as in keeps them on and seems to stand further away from the tv.
Does your son have any underlying conditions or just high myopia? Is your son restricted with what he can do? Sports etc. Is his vision completely corrected with glasses? Sorry for all the questions, don't worry if you don't want to answer, I just can't find much information anywhere.

Hi Sebbiesmum, it's great he has adjusted to them. My son has autism and Dyspraxia as well some other conditions.
He is restricted in a lot of ways, he cannot do any contact sport due to the high risk of detached retina or go on roller coasters etc. His glasses give him usable vision but definitely do not give full corrected vision and they never will given his prescription. It is very hard to get much information on high myopia as there does not seem to be a lot of people with these prescriptions. If you have any questions just ask as we are a good few years ahead of you now.

Thanks again for replying Orange32. It’s a really worrying time so any information is seriously appreciated. I didn’t know about roller coasters but my sons optician did mention about contact sport which I’m not bothered about. Do you know if his vision will stop getting worse when he reaches adulthood? There’s so little information on high myopia and what there is available is terrifying until dystrophy is ruled out.

Hi, my son has progressive myopia so will continue to get worse for a numbers yet and may continue to do so well into adulthood as there has been no improvement yet but I don't know how bad it will get. This may not be the case for your son as it varies between each individual. The most important thing for your son now is that he is wearing his glasses and will have a big improvement in his life as he adjusts to them.
Is he in school/Childcare yet as any teachers will need to he made aware of his vision problems and as he get older he will learn to notice any changes in his vision.
Some kids move to contact lens as they get older which can be good as the glasses can get thicker and heavier when the prescription get stronger, your son would be too young for these yet but maybe in the future.
Any questions just post them and I will answer the best I can.

Thank you very much Orange32 I really appreciate all your help

Hi OP, very often people with nystagmus do have high prescriptions, even when it’s not that noticeable.
Yes, contact lenses often do give better vision in high prescriptions, compared to glasses. The field of view is also larger and you get less distortion. I’ve fitted children as young as 7 - so they could be a possibility sooner than you think.

Eye protection too is very important as he gets older. Sports goggles are a good idea, even for things like football.

@underneaththeash

Hi OP, very often people with nystagmus do have high prescriptions, even when it’s not that noticeable. Yes, contact lenses often do give better vision in high prescriptions, compared to glasses. The field of view is also larger and you get less distortion. I’ve fitted children as young as 7 - so they could be a possibility sooner than you think.

Eye protection too is very important as he gets older. Sports goggles are a good idea, even for things like football.

Thank you underneaththeash you have no idea how comforting it is to read that. I thought the nystagmus was so mild that it couldn't cause the visual problems and everything I have read suggests the shaking is the cause of visual issues in children with nystagmus. So I'm relieved to hear it might just be because of that. The consultant said he thinks it's just how he's wired but wants to rule out any underlying causes. That's great about contacts so early. I'd read from 10 but the earlier the better if that's what he wants. Thanks again!