See About the Photo for copyright information.
Jamie’s Warning: “Request dilation at regular intervals and definitely before any strabismus surgery.”
The following story was originally posted by Jamie Schmidt in our Strabismus Hope email support group. Jamie and I have edited that original post together to provide additional info from Jamie here:
My 9 month old son was diagnosed with strabismus at 5 months, specifically esotropia, and after several appointments with a highly recommended ophthalmologist, surgery was being scheduled for January to relax the inner eye muscles. Up until this point, his eyes appeared healthy, and they had no known cause for his strabismus.
We decided to get a 2nd opinion (which actually felt like a 3rd because our very good optometrist agreed with the first ophthalmologist) from another top ophthalmologist at a different hospital. Same eye exam, dilate the eyes, same routine. However, on examination one of the dilated eyes showed an abnormality and on closer examination by a retina specialist and an ultrasound, he was diagnosed with Coats’ Disease. Our hope is that the vision loss from the Coats’ disease was the root cause of the strabisimus, but only time will tell.
I write to inform all of you about Coats’ Disease, so that if you have a little one and no cause for the strabismus, keep asking for the eyes to be dilated.
Coats’ is considered a rare disease. One internet site stated that Coats’ Disease occurs in approximately 1 in 30,000 births. It is a disease that most of the time affects males under age 18 in one eye. It can usually only be detected with a dilated eye. One other ‘symptom’ is that sometimes instead of having a red eye in pictures, the child may have a yellow eye.
With Coats’ Disease, it is my understanding that the blood vessels at the back of the retina are leaky. They leak water, proteins, and lipids or fats, like cholesterol. The body absorbs the water and proteins, but has a harder time absorbing the fats, which deposit on the retina. If left untreated, Coats’ Disease could cause complete retinal detachment.
Even partial retinal detachment causes blurry to no vision in different spots, and the brain may shut off the mixed signals from that eye. It is sometimes a rapidly progressing disease and needs to be confirmed by an exam under anestheia. If it is truly Coats’ Disease, they can seal off the leaky blood vessels with laser or freezing.
I encourage all of you to request dilation at regular intervals and definitely before any strabismus surgery. If someone has Coats’ Disease, strabismus surgery won’t be effective until the Coats’ Disease is treated. Even the most highly skilled optometrists and ophthamologists could miss this disease unless the eyes are being regularly checked with dilation. Within the last 6 months, our son’s eye was dilated twice and both times the Coats’ was undetected because the lipids had not accumulated.
By the grace of God we decided to get a 2nd opinion at the right time. Any earlier and they probably wouldn’t have been able to see the lipid build-up on the retina and any later and permanent blindness may have resulted, as we weren’t scheduled to have the eyes dilated until before surgery in January.
Jamie shared a separate email about her about her son’s laser surgery yesterday after the procedure:
If left untreated, Coats’ Disease could cause complete blindness in the affected eye and sometimes the eye has to be removed. However, there are methods to reattach the retina. Coats’ Disease can be a cause of strabismus and amblyopia.
Our son is doing great. He just had the exam under anestheia this morning and laser surgery to seal the blood vessels. We couldn’t be more pleased with how he did. He will have to have follow-up laser surgeries. They will have to wait and see how much damage has been done to the retina. He had a moderate amount of build-up of the lipids.
Thank you for forwarding this information on. I hope it may help someone else in the same position. And, just a reminder to everyone, get that 2nd opinion!!
About the Photo:
Photo copyright Jamie Schmidt, used by permission. Jamie writes, “We just took his picture after the exam/laser surgery and actually saw the yellow eye, which we hadn’t seen before. Amazing!” Inquiries about the photo may be sent to ‘jerome DOT schmidt AT mchsi DOT com.’
More about Coats’ Disease
Coats’ Disease is also referred to as “Coates Disease,” but Coats’ is the correct spelling. Coats’ Disease is named after Ophthalmologist George Coats, who first identified the disease in 1908.
Synonyms for Coats’ Disease include
- Congenital Retinal Telangiectasia
- Exudative Retinitis
- Leber miliary aneurysm
However, according to “The Handbook of Ocular Disease Management” (see Resources below), there is a distinct difference between Coats’ Disease and Leber miliary aneurysm.
Here are two sites recommended by Jamie:
Coats Disease Information for Parents
Additional sites that may be helpful:
Handbook of Ocular Disease Management – Coats’ Disease and Leber’s Miliary Aneurysm
Royal National Institute for the Blind (RNIB) – Coats’ Disease
Orphanet: About rare diseases – Coats’ Disease