Thursday, April 30, 2009

First Exam -- Treatment Plan

We met with Dr. Baker Hubbard today at Emory. He confirmed that Ryan has mid-staged Coat's Disease with slight retinal detachment. That it wasn't in a later stage and that his retina was still attached was good news to us. He is optimistic that it can be treated with one or both of Laser Photocoagulation and Cryotherapy. We really liked him and "team Ryan" has been busy gathering information on him -- his reputation (for his experience and bedside manner) is fantastic. We heard only positive things from a variety of sources (you know who you are and we thank you!)

The good news:
Ryan has peripheral vision in his Coat's eye. I assume he could tell by seeing where the fluid has accumulated on the back of his eye (imagine a glass of water with milk slowly being poured in and then trying to look through that glass). He estimates his vision to be about 400/20 in that eye, so unless there is no further deterioration of the vision from scar tissue after the surgeries, he should maintain that vision. I asked him whether they can drain the existing accumulation (such that his sight could be restored), but there is not yet a procedure for doing so. Perhaps some day there will be.

Avastin:
Some doctors are treating Coat's with a drug called Avastin, which is actually a drug used to treat cancer. Avastin is an FDA approved therapy designed to inhibit angiogenesis, the process by which new blood vessels develop. In cancer patients, this anti-angiogenic process starves the tumor of new blood cells. In Coat's
Disease, it is believed that Avastin would greatly inhibit the development of new blood vessels. This could potentially eliminate the need for repeated sessions of laser therapy and the scar tissue (and decreased vision) the scar tissue causes. We talked to Dr. Hubbard about Avastin and he has not yet used it in children to treat Coat's, but he uses it often to treat age-related macular degeneration, the leading cause of blindness in people over 50 years of age. He is interested in exploring it for Ryan. We'll do some research in the meantime on risks, side effects, etc.

Ryan's treatment plan:
Ryan's first surgery will take place at Children's Hospital on May 11th. He'll perform both Cryotherapy and perhaps Avastin (via an injection into the eye). A month later, he'll undergo an Exam Under Anesthesia (EUA) whereby the doctor will be able to tell how much of the leakage he was able to stop. We'll start the whole process over 2 months later, and with any luck, he'll only need the 2 cycles. He could need 3 or 4, but we're optimistic that two will be the charm! After he feels confident that the leaking has stopped, he'll see him every three months, then six months, then once a year. Unfortunately, the leakage could resume at a later date, so there's always a chance he'll have additional surgeries down the road. Then again, there's the chance that medical technology will progress such that his sight can be fully recovered.

The recovery:
We asked about recovery from the procedure. He said his eye will be pretty swollen that first day and maybe the day after and there will be a red spot on the white of his eye. He won't need to be bandaged, so that's probably a good thing from a "keeping a 3-year-old's eye bandaged" perspective. The timing is good because he'll have recovered for his 3rd birthday party (Diego theme, of course) the following Saturday.

Sigh of Relief:
We've been on a roller coaster of emotions. Relieved he doesn't have retinoblastoma, but scared and sad for the upcoming procedures and also knowing that our baby will always have to live with this and potentially lose all vision in that eye. Our family has always been so lucky in the health department and this has been a very humbling experience.

A funny story:
When we first arrived and were brought back to have Ryan's eyes dilated, Ryan flipped out (now he knows about "the drops" and does not like them!) The technician put a drop onto Ryan's hand to show him that they were no big deal. Ryan promptly rubbed his hand into Brian's right eye, so Brian's eye was dilated all day. Now he can emphathize with what Ryan's experiencing! Interestingly, the drops affect children and adults differently - this particular one lasts much longer in adults. Poor Brian.

Glasses:
In the meantime, we have to protect both eyes, so glasses and sunglasses will be part of Ryan's daily routine. We're starting with "Diego" sunglasses and work our way up...it's not easy convincing a 2-year-old to wear glasses, but he thinks sunglasses are cool.

5 comments:

  1. Hi Ryan's Mom. Great post. Our son was diagnosed with Coat's 2.5 years ago, and at the time we felt our world collapsed upon us. It did not. Even though they're your precious jewels, kids are more resilient than you can ever imagine. Love, support, and a whole lotta make-up fun will get you all through this.

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  2. Scott shared this with me, Amy. I am sorry to hear about Ryan's troubles, but am proud of your resolve. You are in my thoughts.

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  3. I am a retina specialist at Thomas Eye Group in Atlanta and know Dr. Baker Hubbard both personally and professionally. I have treated pediatric cases of Coats' disease both with Avastin and laser. I can tell you that any retina specialist in Atlanta would have Dr. Hubbard take care of their own child. You are in good hands!
    Jessica McCluskey, MD

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