Help with Irlen Syndrome

[IzzyBusy]

Hi,

This is my first ever post, so a bit nervous, apologies in advance for any 'talk' mistakes.

My DD (age 7) was diagnosed with severe Irlen syndrome last year, she has now got her Irlen lens glasses, which have made a fantastic difference to her reading and well being.

We have had her tested privately in the Midlands and the cost for the test, lenses and glasses has all added up. My husband was also tested positive for Irlen syndrome, and we are yet to buy his lenses because of the cost. I was wondering if anyone knows if we can get help from the nhs? or has any other useful advice regarding getting help for Irlen.

[EcoLady]

NHS won't normally fund tinted lenses for Irlen's, but the school may be able to source some coloured overlays for books and to print her work on coloured paper which may help.

[Muminwestlondon]

My DD was tested by the Dyslexia Research Trust which at that time had clinics in Oxford and Reading - it specialises in diagnosis of Irlens. I think they are more involved in the diagnosis than long term treatment, but they did do some free clinics (though there was a waiting list) so it might be worth contacting them.

[IzzyBusy]

Thank you both for the info, I think as a family we are at the start if a long journey.

[Mutteroo]

My DH, DD & DS all have Irlens syndrome. we've had to fork out but fortunately only once each. Have told all three they're under pain of death if they break their glasses!

Another thought is not to worry about the lenses but get coloured acetates (sp). It's a lot cheaper if less convenient. Don't be too daunted by the journey. It is the start of good things!

[IzzyBusy]

Thank you Mutteroo

We used the overlays initially, and they certainly worked but the glasses have brought further success. My worry is as DD keeps growing she will inevitably need new glasses the optician said sometimes they need replacing after only 6 months, something we naively hadnt considered not being glasses wearers.

Its good to hear from other people who have experience of irlen, as so many people havent heard of it and some are sceptic.

Having discovered the difference it has made for DD, it is indeed the start of good things!

[smee]

Ask the local education authority, as some do fund. Also, try your GP as they might have some ideas.Might be worth speaking to your Head Teacher too, as if they're seeing a strong difference in your DD's work, that might carry some weight. Having said that we got nowhere trying to get help, so let us know if you find out anything useful! I just know DS will lose his at some point. Great that your DD's found it all helpful though. My DS does too. Can't believe he got to 8 before anyone (including me!) picked up on it.

[IzzyBusy]

Good advice, I actually spoke to my GP earlier this week, she had not heard of it before but did say she would investigate and get back to me. I will try local education authority like you suggested. I asked for a meeting with Head however he just directed me back to the class teacher, who in fairness has been supportive, as was the SENCO teacher, although neither had heard of it before, which is a shame as I feel sure DD is not the only child at school struggling with reading due to Irlen syndrome.

If I have any success I will let you know. Thank you for your help.

[smee]

Yes do let me know. Will do the same if I find out anything too. Good luck!

[kicker]

Look at this facebook page www.facebook.com/groups/parentsofkidswithvisualstress/?ref=ts&fref=ts
I am taking my DD age 6 to be tested next week so we will have an official diagnosis and hopefully get some formal help for her.
At the moment it's just me supplying the school with reading rulers,coloured paper, coloured writing books and coloured marker boards. The school have been quite helpful in turning the whiteboard purple for her for (despite some other boys protests)
Its been quite an expensive year but I couldn't bear to see her struggle. She is now complaining of headaches so the next step is to get the tinted glasses I guess.

[kicker]

Apparently you can get DLA if there is a formal DX. I was surprised to hear that.

[smee]

Thanks Kicker, have just e-mailed the Admin on that link. I didn't know about the DLA. Seems so unlikely, but worth looking into definitely. Hope you get some help with your DD. The tinted glasses have made a massive difference to my DS.

[IzzyBusy]

Hi Kicker, thanks for the link, it also led me to find this online petition to get Visual Stress recognised by the Educational Authorities and the NHS.

www.causes.com/actions/1677167-visual-stress-meares-irlen-syndrome.

Best of luck next week when you get your DD tested. My daughter also suffered headaches, along with complaining the words went 3D or fizzy and would constantly rub her eyes which is what alerted us to have her tested for Irlen Syndrome. The glasses have made a huge difference she is reading with far less hesitation, fluently with out losing her place or struggling over repetitive words, all difficulties that had blighted her progress to date. Above all she is happier now she is no longer so frustrated.

[hendo2]

check out www.jordanseyes.com. Got my son tested here and the initial screening was free (takes about an hour). Tinted specs were prescribed and we got them within 3 days at a cost of £30 (for the trendy frames). Ian Jordan is a very well respected professional and is fab with children

[MariscallRoad]

My ds (student now) has been recently diagnosed irlen and dyslexia and will be seen by colourimetrist for precision coloured lenses because overlays were not in his case effective. There is no help from nhs.

You need a specialist to actually measure by % how much the overlays are effective and whether u need a colourimetrist.

Many thanks to IzzyBusy and hendo2. Good luck.

[mollymole]

Is is not a huge help, but if the optometrist can find even the smallest of prescriptions to issue then you can at least get the voucher value against the cost of the lenses, for children and those on some benefits. this would be a minimum of £37.10 PLUS a tint allowance of £ 8.20, so you then have £45.30 value to set against the total cost.

[IzzyBusy]

Have contacted Jordans Eyes, thank you hendo 2

They advised we would be covered by the Nhs in Scotland, at their clinic and others, unfortunatly this does not apply for England. As we have family in Scotland that we visit regularly this is actually possible for us. However I feel strongly that we should be supported in England and as a starting point plan to write to my MP.

Also thank you mollymole for your advice regarding the smallest of perscription.

Big thank you to everyone who has joined this thread.

[tostawife]

Just note that Jordans Eyes does not treat Irlen Syndrome. Good luck on your Irlen journey. There is a Facebook page for Irlens with a large community of other sufferers (www.facebook.com/note.php?note_id=444243614694#!/pages/The-Irlen-Institute/175097189922). Here, you can interact with over 3,000 other individuals with Irlen.