Anyways, we went to the eye Dr. in anticipation on leaving with a patch. We left with a diagnosis of Coat's Disease and glasses, which he will now wear for the rest of his life.
What is Coat's Disease? The way I understand it is, there are abnormal blood vessels behind the retina that are "leaking" protein into the eye. The protein can build up, causing the retina to swell. This can cause the retina to tear away {which will cause blindness}. It's not something that can be stopped. There is no treatment for it. Laser surgery or cryo-therapy might help slow it down, but it can only be performed when the disease is in certain stages. It is not hereditary, it was just something Sammie was born with and typically shows up between 5 months and 8 years. Usually by the time it's caught it's so late that not much can be done. He's so young and unable to tell us his eye is fuzzy, and that he can't see. It's a very rare disease and typically shows up in little boys {more so than girls}.
We saw Dr. Tufty this morning, who confirmed the diagnosis. At this point I am not sure how well he can see out of his left eye. I do not know at what stage the Coat's Disease is at in his left eye. The good news is it usually only effects ONE eye. His right eye seems to be ok. He will forever wear glasses to protect his good eye...the glasses do nothing for his Coat's eye. The Dr. saw swelling behind his eye today.
This disease could eventually leave him blind in his left eye. It all depends on how far it is progressed and what kind of treatment is available. Dr. Tufty was amazing with Sam. I am relieved that he will be the one caring for Sam through this life long process.
Sam has to go under anesthesia next week so the Dr. can get a better more thorough look into his eye. He wants to also make sure this is not Retinoblastoma {which is cancer}. He said the symptoms mask Coat's Disease and Sam is at the prime age that Retinoblastoma shows up. He will also have an MRI to rule this out.
All this will take place next week {Happy Thanksgiving right??} So I will keep you posted as to what information we are given. Please keep Sammie in your thoughts and prayers!!
Mommy and Daddy LOVE YOU SO MUCH SAMMIE!!
Hi my name is Ashley and I share your pain. On 11-11-11 my 2 year old daughter had surgery on her left eye due to Coats Disease. I too noticed a wandering eye and scheduled a doctor's appointment. On 10-11-11 my daughter was diagnosed with Coats. She has lost her central vision in her Coats eye. She has perfect vision in her right eye, so she wears protective glasses. The surgery was a huge scare for myself, but everything went great. It is actually a simple and painless procedure. She was back to her normal self the same day. I still sometimes have trouble coping with the changes, but she handles it all quite well. I haven't noticed any changes in her or her behavior since the diagnosis. We have been back since the surgery and everything is still looking great. I hope the same for your son. I wish him and your family the best of luck. I'm going to keep you all in my prayers.
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