Ds 5 developed a squint and has asd, private or nhs really need advice

[MrsBobDylan]

I would be so grateful for your help. DS is 5 with ASD and goes to a sn school. His right eye is turning inwards intermittently and he has an appointment with ophthalmology in September. I'm worried about waiting that long to start treatment.

He has private healthcare through my job but my instinct is that he would be best to wait for the nhs, but then I worry that as he could be seen quicker privately, I should do that as well. But, ds hates medical appointments and will scream, kick, spit and throw anything to hand to try and get away. It is truely terrifying for him. I don't want to put him through any more appointments than I absolutely have too.

My youngest child is under nhs ophthalmology so I know a bit about what to expect and I can't imagine how ds5 is going to cope with all the touching and being looked at.

I feel quite upset about this. DS has enough to endure and I just want to do what's best for him but I don't know what that is.

[Reekypear]

Given that lady's eyes set at 7, his window for treatment is closing.

[Reekypear]

Get a private appointment, and keep the nhs and feed back in at that appointment. They can sort out glasses etc right now, then carry on monitoring it under nhs.

[MrsBobDylan]

Thanks Reekypear I think I agree. We are noticing his eye turning inwards more often recently and that he holds his head at an angle, I think to aid his vision.

I have found a private consultant who also works in the nhs hospital DS has been referred to so I guess that might lend some continuity in the longer term.

I'm worried that DS will be so resistant to examination/treatment that it will render his squint untreatable.

[Dansak]

My ds developed a squint at 4 and getting treatment quickly is key. Go for the private one, most of the tests were looking at charts and pictures, but giving eyedrops to take a close look at the eye was also done.

I'm sorry I don't know much about asd and if prepping him about what to expect would help. Would he feel more comfortable having it done an the opticians, rather than in a hospital environment? My ds had all the tests done at the opticians and the subsequent hospital consultation didn't repeat what had already been done there.

[MrsBobDylan]

Dansak do you mind me asking what they did to treat your ds' squint and how he is now?

My DS was initially referred to ophthalmology because they couldn't carry out the 4/5 year eye checks at his school. And they tried on two separate occasions! The school paed referred him on but since then we have noticed his squint.

I'll try and find a child's book on eye tests but he is so self-directed I cannot persuade him to do something he doesn't want to very easily at all.

[Dansak]

He only started with his in January, so still quite early days, but so far wearing glasses is holding it in the correct place. If it stops working, then i think we'll have to go down the patching route. We go for a check up every 3 months at the hospital, basically just the same eye tests the opticians do, but then the optician prescribes the glasses.

We have a great book called Arlo wears glasses, that was the most upbeat one we found and also has a little bit about the eye test in it.

We also got a teddy with glasses from build a bear and found loads of characters wearing glasses on google.

I would hope they have some experience in getting the eye test done in this situation and methods for getting the results they need.

[Dansak]

Someone on here directed me to a great website called Little four eyes, loads of information on there. They also have a facebook group with thousands of members all over the world, I am sure someone on there will have been through something similar if you wanted to ask.

[MrsBobDylan]

Thanks Dansak I'll get that book ordered get DS on the website. He'd love to build a bear so I'll treat him to that and googling characters with glasses is a great idea. He adores googling!

I'm glad glasses are working help your son. Sound like it's an ongoig process to treat squints. I'm more sure than ever that private is the right way to go-ds' eye is turning in more than it's straight today and I want to start treatment asap.

[Dansak]

Glad to be of some help, I know its quite alarming when their eye starts going all of a sudden. I hope you're able to get an appointment and treatment started quickly.

[Karoleann]

Its very likely that he's just long sighted and needs glasses to straighten out the squint. He may also need a patch for a bit to get the bad eye up to the same visual level as the good eye.

At 5, most high street optometrists can see him. they'll probably need to refer on afterwards, but they can at least prescribe glasses to improve the squint in the meantime.

If a child is long sighted (so hyperopic) they usually have the ability to change the focus in their eyes (accommodate) on order to see clearly. An unfortunate consequence of this excessive accommodation is excessive convergence (or bringing the eyes together) and that tends to express itself as a squint.

Anyway either get a Optometrist appointment or a private ophthalmologist - 3 months is too long to wait.

[MrsBobDylan]

I have had to rule out a high street optomistrist as DS will need to be tested in the same way as a much younger non verbal child would be. He actually is verbal but his receptive understanding is very limited.

I've been ringing round this morning - private ophthalmologist has to do full first assessment in two halves as they don't have an Othoptist on site. I'm not sure that's going to suit DS as he needs it done in one hit really to help manage his anxiety.

Nhs ophthalmology have told me that if I ask the GP to send a letter stating DS' squint is worsening they will endeavour to get him an appointment sooner.

I think you're right Karoleann that he's probably long sighted. Ds3 is and he's under ophthalmology for monitoring. Thanks for your help, it's spurring me on!

[Dansak]

We got seen within 4 weeks, so hopefully you won't have to wait too long. Good luck.