Timolol

This week our daughter had an appointment with her ophthalmologist. The doctor was pleased with what she observed through her tests. Our daughter seems to be tracking objects well and using both eyes equally. We were asked to continue patching her good eye for about an hour a day so that her left eye can have additional practice. Soon, our daughter will be old enough that she can tear the patch off of her eye, so the more patching we can do now, the better!

During our appointment, I discussed the use of a drug called Timolol with the ophthalmologist. (Our dermotologist mentioned Timolol to me as an option for the first time last week.) This eye drop is used for glaucoma patients, but is the same type of drug (beta-blocker) as the Propranolol (blood pressure medication) that our daughter is taking orally. The thought is that by using the eye drop twice a day, the hemangioma around the eye would be encouraged to reduce in size...kind of like an extra boost. There is some very positive research regarding this type of medication in other patients with PHACE Syndrome. Applying an eye drop for an infant on Propranolol is a little complicated and will take both parents in order to be successful. We can also rub the serum directly on her face which may be able to reach some of the hemangiomas close to the surface of her skin.

We tried the Timolol for the first time Tuesday night. It was a challenge, but one tiny drop did get in her eye. We also rubbed some extra drops on the pink places on her face. The next morning we noticed increased swelling in her left eye. We were suspicious that there might be some type of allergic reaction. Unfortunately, almost 48 hours later, she's still pretty swollen around the eye and on the back of her neck. After talking to the doctors, the more likely scenario is that the growth of the hemangiomas is increasing rapidly. We will try another drop again tonight to see if we see a similar reaction.

If the hemangiomas really are growing again, we have the option of increasing our daughter's oral steroid again...we don't like this option because of how this drug compromises her immune system. We also have the option of doing additional steroid injections which is the outpatient surgery that she had in March. To complicate matters, my 12 week maternity leave is officially over tomorrow and I'm headed back to work on Monday. Our daughter still is not healthy enough to be around other children, so our mothers are coming from Houston to tag-team taking care of our daughter during the week. This schedule will continue through the month of May. I am grateful for the sacrifice our mothers are willing to make to support us!

Please pray that we make the best decision regarding next steps for our daughter's medical treatment. Please also pray for us as I go back to work next week. It will be a week of many tears as we all adjust to this new schedule!