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debknechtel 05-31-2005 08:19 AM

Scotopic Sensitivity Syndrome
 
SCOTOPIC SENSITIVITY SYNDROME

just curious if anyone else out there has a child how has this syndrome, commomly referred to as Erlin's syndrome?? My son has been having difficulty is school and they believe this is what he may have. What solutions have you used??? I have read about the color lenses with glasses or color overlays and colored paper being used to help.
Any input would be appreciated.

SCOTOPIC SENSITIVITY SYNDROME


Irlen Syndrome, also known as, Scotopic Sensitivity Syndrome (SSS) is a type of visual perceptual problem. It is not an optical problem. It is a problem with how the nervous system encodes and decodes visual information. Academic and work performance, behavior, attention, ability to sit still and concentration can be affected. Individuals with this problem see the printed page differently, although they may not realize that they do. Having Irlen Syndrome keeps many people from reading effectively, efficiently, or even at all. Until now, it has baffled educators and medical scientists because it is undetected by standard visual, educational and medical tests.

Individuals with Irlen Syndrome see the printed page differently from those with normal vision and must constantly adapt to distortions appearing on the printed page. They may be slow or inefficient readers, exhibit poor comprehension, suffer from strain, fatigue or headaches. It can affect their attention-span, energy-level, motivation, handwriting, depth-perception and, ultimately, self-esteem. Irlen syndrome sufferers may be labeled as underachievers with behavioural, attitudinal, or motivational problems. It is a complex and variable condition sometimes found to co-exist with other learning-disabilities.


Hugs Debbie

Abear 06-02-2005 06:37 PM

Debbie - I heard an interview on a local radio station with a doctor that specializes in this syndrome...at least I think thats what it was.

She said that alot of children with this syndrome are misdiagnosed with ADD or ADHD.

According to her, it is very treatable with therapy.

After the interview, she advertised on that station for quite a while but I don't remember hearing her ad in a while.

Have you had Jamie actually tested for this symdrome yet??

debknechtel 06-02-2005 07:05 PM

Cindy We had a partial testing but he will be going for a full testing as soon as we can book a specialist in to see him...takes a while as there are not that many. The words move up and down on the page when he reads so he rereads lines or skips lines.

Hugs Debbie

debknechtel 06-15-2005 07:34 AM

Well Jamie was tested yesterday and he does have Irlens syndrome. They gave him a red color overlay to use when reading....hopefully that will help him. Now i will have to meet with the specialist and the school teacher and support staff to insure all is done to help Jamie with this.


I would love to hear from anyone who has a child or themselves who have been diagnosed with this syndrome. Trying to find out as much as I can



Hugs debbie

debknechtel 06-25-2005 06:25 PM

Just found out this week that Jamie's glasses will cost 800 dollars!!!!!

Would love to hear from any others out there who might have some info on Irlens. I want to make sure that the glasses will be a help before spending the money.

Our medical insurance will not cover the cost as they don't consider this to ba a medical condition. I am trying to fight this.

Hugs Debbie

debknechtel 10-16-2005 07:28 PM

Just an update....We got a pair of glasses for Jamie. They cost us 940.10 when all was said and done. We ran into problems with having them cut to fit in the frames. The lenses come from California uncut. We then had to got to an optometrist to buy frames and have them cut to fit. The optometrists did not want to touch the lenses because they were not from there store so if they broke they were not covered. We ended up getting insurance on them right away and then on the whole glasses once they were cut. Jamie's lenses are olive green in color and are a combination of 5 colors, Amber , rose and 3 shades of green. He has adjusted well and the kids at school think they are cool. He is to wear his all the time due to the depth perception and tunnel vision problems that come with this. He is finding it easier to read but they say it will take 6 months before we see improvemnet. We finally found that a few local service clubs are willing to give some money towards the glasses which will be a big help.


Hugs debbie

megrayau 10-19-2005 03:54 PM

Hi debbie,

Glad Jamie has his glasses and the kids at school are OK about it. It will be good to hear of his progress as he adapts to seeing things the way most others do! I hope there is some way of a local group helping out with the cost. Will the insurance cover breakage from playground/kid type accidents?? Just in case??
Hope all goes well.
Meg

debknechtel 10-20-2005 03:13 PM

Thanks Meg

The insurance covers loss, theft or breakage so it is worth the 30 dollars a year as we could not afford more than 1 pair a year at this point. Looks like the lions club is going to offer us some funds just not sure of the amount as of yet. They are only a small club so it won't be much but I am thankful for anything to help ease the burden. Thanks for asking

Hugs Debbie

Cam1952 10-23-2005 06:12 AM

Debbie;

I have never heard of Irlens Syndrome, but I am glad that your son, Jamie got the help he needed.

debknechtel 10-24-2005 03:44 PM

Thanks Carol, it is making a big difference in his life now that we know what is wrong

Hugs debbie


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