Achromatopsia and contacts for an 8 year old boy.

**Uncle Fester** · 11-13-2006, 01:42 PM

I have a young active 8 year old boy who is a customer and has achromatopsia (no cones on his retina) and is extremely photophobic. He wears no correction but his parents have purchased several rec specs and sunglasses over the last couple of years from me. Dad mentioned that some bloggers who have the condition have suggested red tinted contact lenses. One man posted he felt he was freed from near blindness the improvement was so dramatic! Yes I know he is still very young. My doc suggests he be referred to Mass Eye and Ears Pediatric Ophthalmologists.

Before I do that and since the condition is so rare I was hoping some Optiboarders might be able to relay some experiences from their patients.

Suggestions and comments are welcome!

**EyeFitWell** · 11-13-2006, 02:20 PM

I've made plum tinted lenses for one patient I had. She had worn that same color tint for years, so I'm not sure if red might have been better for her. I didn't question the color since she already knew what did work.

**HarryChiling** · 11-14-2006, 08:47 AM

I have dealt with 3 seperate cases just last year, once you help one of them they seem to let the network know who yoou are. Some acromats seem to like the dark reds. If you give me your e-mail address I will send you my research n achromatopsia.

**Ory** · 11-14-2006, 12:01 PM

From a purely physiological standpoint, dark red lenses are ideal (as others have already posted).

Typically you just have to try a few things until you find the ideal.

**HarryChiling** · 11-14-2006, 12:11 PM

Their is a great book out in pdf format for free at the achromatopsia network.

www.achromat.org

Check it out it will have all the information you need on lenses and specific tint colors. I think BPI makes a tint called monochrome 600 that is a dark red I have had a few patients in this lens and they swear by it.

**Uncle Fester** · 11-14-2006, 01:11 PM

Thanks for the replies! Now can this tint be successful in anything other than CR-39? I've never gotten poly to tint really dark. How about trivex? The bottle of tint is pretty pricey so I want to be sure it can be made to a 90% density. He's about a +3.00 hyperope.

**HarryChiling** · 11-14-2006, 01:23 PM

I have always done it in a CR-39, so I can't tell you. When children are involved it is a little tricky. Is the child safer not seeing with a pair of shatter resistant lenses or is the child safer in a CR-39 that they can see out of. I have always explained it to the patients and then make the lenses thicker for safety.

I had one child come in walking with a cane, and after the glasses he no longer used his cane.

**Ory** · 11-14-2006, 02:10 PM

I thought the question was about contacts. Glasses will likely let more light in from the sides which would cause glare issues. Obviously frame selection will be important on this one.

I don't see any concern with CR-39 on this patient. A +3.00 should be pretty impact resistant. If you're really concerned, you could always make a poly carrier with a CR-39 clip on that is tinted.

**EyeFitWell** · 11-16-2006, 01:54 PM

Uncle Fester,
I've used a stock poly lens called True Tint. I was able to get many a pair quite dark into the level three or even four saturation.

**Uncle Fester** · 11-04-2008, 05:02 PM

Bringing up an old thread for a complete rod monochromat patient (now 10) who is looking for safety glasses for basketball.

He has some old Rec specs he used to play football but has been wearing contacts with a red face shield this season. I think can still be used for hoops. If they can I'm leaning towards a BPI Monochrome 600 Ruby Red for a tint.

Does anyone have a technique or suggestion to custom fit a leather (or other) side shield light blocking occluder for this kid. Will fogging be a problem?

Lastly mom says the achromat grapevine says the Nike Amber Max Sight Sport contact lens is being discontinued. Is this true? Are custom contacts available if this is true?

Thanks in advance for any info you can give me!

**Fezz** · 11-04-2008, 05:03 PM

Originally Posted by Uncle Fester

Lastly mom says the achromat grapevine says the Nike Amber Max Sight Sport contact lens is being discontinued. Is this true? Are custom contacts available if this is true?

Thanks in advance for any info you can give me!

I have heard that the lenses are Disco'ed as well.

**chip anderson** · 11-04-2008, 06:57 PM

Rigid lenses red.

**jherman** · 11-04-2008, 09:29 PM

works well

Originally Posted by Uncle Fester

Bringing up an old thread for a complete rod monochromat patient (now 10) who is looking for safety glasses for basketball.

He has some old Rec specs he used to play football but has been wearing contacts with a red face shield this season. I think can still be used for hoops. If they can I'm leaning towards a BPI Monochrome 600 Ruby Red for a tint.

Does anyone have a technique or suggestion to custom fit a leather (or other) side shield light blocking occluder for this kid. Will fogging be a problem?

Lastly mom says the achromat grapevine says the Nike Amber Max Sight Sport contact lens is being discontinued. Is this true? Are custom contacts available if this is true?

Thanks in advance for any info you can give me!

**mlm** · 11-05-2008, 01:55 AM

Originally Posted by Uncle Fester

Lastly mom says the achromat grapevine says the Nike Amber Max Sight Sport contact lens is being discontinued. Is this true? Are custom contacts available if this is true?

Thanks in advance for any info you can give me!

In Canada, they're definitely disco and have been for a while now.

It's funny that I'm reading this because I just made a post thanking Adventure in Colors for their great work in tinting a pair of contact lenses to a Corning tint for one of our patients with albinism. They say that they do the standard Corning tints plus any custom tints from a sample. Apparently, the matching is done by spectrometer to match the wavelength transmission.

I'm at home, so I don't have the contact info handy, but if you're interested let me know and I'll post it tomorrow.

**Craig** · 11-05-2008, 08:08 AM

Originally Posted by Uncle Fester

Thanks for the replies! Now can this tint be successful in anything other than CR-39? I've never gotten poly to tint really dark. How about trivex? The bottle of tint is pretty pricey so I want to be sure it can be made to a 90% density. He's about a +3.00 hyperope.

The lens is a trivex transitons in a rose color- it can be tinted darker on the back. Being a transitions might be a nice option for him.
It was designed with contrast in mind and may be an option.

I have attached the information and please let me know what help i can offer. I could get you a sample for him to try in plano!

Let me know if this option is worth exploring.

Craig

**chip anderson** · 11-05-2008, 08:16 AM

They are disco'd because they were a useless gimmic appearently only worn by athletes who got paid to wear and endorse them.
They were "designed" to be worn by patients who had normal eyes and played ball. Don't think they had any theraputic application at all.
Go with Red or deep red-orange or somthing similar. Opaque periphery is something concider but will block a lot of peripheral vision on the basketball court.
You and get both hard as soft lenses tinted to the desired color/transmission.

Then patient will be able to wear plano's in clear for safety in sports.

Chip

**Chris Ryser** · 11-05-2008, 08:41 AM

Originally Posted by chip anderson

Rigid lenses red.

Here

**Andrew Weiss** · 11-05-2008, 08:53 AM

Fester, I have two thoughts on this:

1) A glacier-glass similar to the old Bolle ones. They're usually made out of nylon with breakaway pins in the hinges -- similar to the old Criss All-American. And they have the leather side-shields.

2) Use a conventional sports goggle, like the Leader Zoom, and make a pair of side shields by hand out of clear plastic, as you would have done for patients with dry-eye before punctal plugs came along. Both you and Wayne probably remember that I know how to do this (or I should say, "knew", as I havnt' done one in at least 15 years), and if you want a refresher on how to, etc., just PM me.

**HarryChiling** · 11-05-2008, 04:11 PM

Originally Posted by Uncle Fester

Bringing up an old thread for a complete rod monochromat patient (now 10) who is looking for safety glasses for basketball.

He has some old Rec specs he used to play football but has been wearing contacts with a red face shield this season. I think can still be used for hoops. If they can I'm leaning towards a BPI Monochrome 600 Ruby Red for a tint.

Does anyone have a technique or suggestion to custom fit a leather (or other) side shield light blocking occluder for this kid. Will fogging be a problem?

Lastly mom says the achromat grapevine says the Nike Amber Max Sight Sport contact lens is being discontinued. Is this true? Are custom contacts available if this is true?

Thanks in advance for any info you can give me!

The grapevine is correct they are discoe'd, PM me for comparable solution. With the glasses like Andrew mentioned moisture chamber glasses with not clear but a tinted vinyl would probably do the trick. Also on a conventional sports goggle you can purchase thin weather stripping and place it on the back so that it creates a nice seal and blocks out light.

**Andrew Weiss** · 11-06-2008, 10:34 AM

Originally Posted by HarryChiling

With the glasses like Andrew mentioned moisture chamber glasses with not clear but a tinted vinyl would probably do the trick. Also on a conventional sports goggle you can purchase thin weather stripping and place it on the back so that it creates a nice seal and blocks out light.

Both great ideas! :cheers:

**HarryChiling** · 11-06-2008, 10:43 AM

Originally Posted by Andrew Weiss

Both great ideas! :cheers:

Thanks the moisture chamber was your idea, the weather stripping I've used before, also if you were detailed enough you could stagger sections of the weather stripping to prevent light from entering but allow moisture to escape so it would be less likely to fog up, couple that with some fo Chris Rysers products to prevent fogging and whalla a sports goggle.

**Uncle Fester** · 11-06-2008, 11:22 AM

Harry thanks for the PM.

I called Hilco about the moisture chamber and it doesn't look like the best solution. He has to wear sports safety eyewear for basketball and it doesn't look like a good match to the frame. The weather stripped, tinted monochrome 600 Rec Spec is where I'm leaning.

My Doc's don't want to get involved in custom tinting soft CL's. Anyone in Greater Boston do this? Preferably Metro West.

Thanks to all for the replies!

Optiboarders Rule!!:cheers: