Keston's battle with Coats Disease

Fall 2024 update

Our family has experienced a hectic fall season, and I apologize for the delay in updates. Recently, Keston visited Duke Eye Center for a check-up. His eye vision remains good, and eye pressures are normal, but Dr. Maldonado indicated fluid leakage has resumed. Considering Keston's age, administering another injection would be complex due to required general anesthesia. He has undergone four anesthesia procedures since November 2023. Although his eye has improved 75-80% since diagnosis, the consensus is to avoid anesthesia risks and recheck in two months. This is heartbreaking since eye injections effectively reduce fluid leakage. Dr. Maldonado's youngest patient for an injection was 16 years old. Meaning, we face many more years of anesthesia and surgery, which is unsettling. While fluid leakage has resumed, Keston's eye remains healthy. We appreciate donations to our GoFundMe for travel costs and insurance deductibles. Even just sharing this post to spread awareness for this silent disease. Regular eye exams are crucial, even for young children. Thank you for your love and support. Our next update will be in January.

In the pictures the red circle is the exudates from leaking blood vessels. The blue brackets show the part that has been treated with laser.

Update

Keston had surgery on July 18th where the 3rd and final (for now) eye injection was administered. Surgery went well! The imaging showed improvement from the last visit. Good news is the next appointment in 8 weeks will be just an office visit and we will not have surgery scheduled. Yay! Thank you for all the support. Please donate to Kestons go fund me if you can. It helps us with gas, hotel and food during these visits to Durham, NC. As always please get regular eye exams especially for young children. Thank you ❤️

Taken from a support group for families affected by coats disease. This gives some more details about the condition.

"Good day ladies and Gentlemen. As I mentioned in previous post that i would start an awareness campaign to help parents understand coats and its follow up. Today I wanna talk about some features of this illness. As many parents would find it distressing and they might search online and listen to many vloggers and might end up in further confusion. We here, would focus on basic information first and work our way up.

1. So far it is not proven to be genetic

2. It is not an infectious disease so it cannot be transmitted to other kids

3. No bacteria or virus has been identified as a causative factor

4. No chemical/drug has been found so far to cause this

(but the point i wanna highlight is to be safe when giving any medicine to kids. Do not overmedicate and do not self medicate. Children are always growing and their body cells keep dividing. If u see any medicine which is not suitable for the age of ur kid, please avoid it and discuss with ur doctor)

5. It is common in male kids

6. It involves single eye in 95% cases

7. The diagnosis is clinical, it means that there is no laboratory test which can establish the diagnosis. The doctor will examine the eye and reach a diagnosis

8. To establish the diagnosis, the doctor would go for Fluorescein Fundus Angiography (FFA)

9. In FFA, a dye in injected into the blood and pictures of retina are taken. The dye can highlight the vessles to the doctor showing which vessels are abnormal and leaky. The same is repeated for follow up and this procedure is done under anesthesiia

10. OPTOS is an equipment which can take pictures of retina.

11. OCT creates a 3D picture of the eye and can show if the retina is detached.

12. follow ups after laser sessions usually involves both OCT and optos to see progress and also the physician checking the back of retina with his own eye through a simple microscope held in front of the eye

13. Apart from optos and OCT, visual aquity and intraocular pressure can be measured in every follow up.

I might still be missing alot info but its getting longer. any questions? pls feel free to ask me. I am a physician with a coats kid based in Saudi Arabia"

Update

Keston will be heading back to Duke University to meet with the specialist in a little over a week. We will see how his eye reacted from the 1st treatment he had back in November and what the next steps are going forward.

My grandson Keston who is just 3 years old has been diagnosed with a rare disease. Coats disease.

"Coats disease was first described in 1908 and is a rare disorder characterized by abnormal development of the blood vessels in the retina. The retina is a nerve-rich tissue lining the back of the eye that transmits light images to the brain, which allows a person to see. Therefore, affected individuals may experience loss of vision due to changes in the retina and, in severe cases, retinal detachment. In almost all people with Coats disease, only one eye is affected. Rarely, both eyes may be exhibit symptoms, however, one eye is often affected more than the other. The specific cause of Coats disease is not known."

Keston is a big brother to Keeran and several fur baby brothers and sisters. He is super active and outgoing and loves everyone.

As a young family life is already a struggle and now adding this battle will be even harder. They will need to travel to see specialists incurring not only the medical bills but travel expenses and time off of work. He will need to have regular testing and check-ups which will add up quickly.

This is all new so knowing everything involved is very unknown. All help and prayers will be greatly appreciated. If you are not able to donate please say some prayers and share the gofundme link.

Much love and thanks from all of us!

Nana and Papa McCann