Pediatric Dermatologist

The next step in our journey to treatment was the pediatric dermatologist. I had called our pediatrician and she recommended someone at Phoenix Children's Hospital (PCH). I called to make an appointment but they were scheduling about two months in the future (when I was already back at work!). They said I could get the pediatrician to call and try and get an earlier appointment and that I could get on the wait list for earlier appointments if they came up. I did both and lucky for us we got an earlier appointment. It meant we had to cut our Twaddell Williams trip back by a day, but it was no problem.

Graham and I both went to see the dermatologist with Enler. It was fun going as a family. PCH is a gorgeous campus and the dermatologist office was lovely. Best of all, there was a very cute kids movie on in the waiting room. We giggled in amusement as the dogs told silly jokes to one another. We didn't get to watch long though as Enler was brought back quickly to see the doctor.

As soon as the doctor entered the room I think we both knew we would like him. He's an older, grey haired jolly looking man and was wearing a turquoise bolo tie (Arizona's state neck wear!). He asked about Enler's name and as soon as Graham got the word Ireland out of his mouth the doc dove into stories about his very recent trip there. He had been to the Giant's Causeway and we spent some time sharing our awe of the natural wonder. He even had a pint in the historic Crown Bar in Belfast, a bar that is next to the bar Graham worked at for many years. If we had been nervous prior to this introduction, we were definitely not now.

The doctor then started to talk about Enler's birthmark and its treatment. He called Enler's port wine stain extensive and said he would definitely recommend treatment. He said he would probably need between 5 - 12 treatments and that we could start as soon as we were ready. We would need to leave at least two months between each treatment. He likes to treat babies before they are four because that is when they develop permanent memory. The treatment is done with a laser and actually only takes about 20 minutes. The thing that takes long is getting him under anesthesia. They do that because the laser treatment can be painful. Enler will have a big bruise on his face for about a week after his treatment. The doctor said he would give us a note to have regarding the treatment so no one thinks we were abusing our baby (apparently that has happened in the past with his other patients!).

Then, the doctor asked us what insurance we had. Up to this point we hadn't even considered the fact that treatments might not be covered under insurance and we may have to pay out of pocket. Financial aspects of treatment had not entered into our previous conversations. We told him we were on United, but switching soon because I was starting work (and my work insurance would be about $300 less a pay check then we were paying now). He said that was too bad because United usually covers the procedure with no problem. Blue Cross Blue Shield (which was basically what we were switching to) gives his office a lot of headaches. However, if he discussed the concern for glaucoma and sturge weber (given the distribution of Enler's birthmark) he thinks it could be covered. Oh dear, what a mess! On top of adjusting to Enler's birthmark, researching the associated diseases, deciding whether or not to treat and following up with all the necessary doctors, we also had to figure out insurance issues!

With the insurance issue in mind, we discussed staying on United. However, we had just got a letter in the mail from United saying they were no longer going to cover our pediatrician. We really liked our pediatrician so didn't want to switch. We decided we'd switch to the Mayo plan (Blue Cross Blue Shield for Pediatrics in Arizona) and take it from there (and that's where we still are). We have scheduled Enler's first treatment for October as I scheduled a week vacation during that time. Graham can take some time off too and we'll be able to hang out at home with him. The doctors office is currently checking with our insurance to see if the procedure is covered. We will find out soon! If not, it will cost $5000 a treatment.

So many things to think about! At least we loved the dermatologist and really trusted him. He's been at PCH for awhile and has treated hundreds of kids with port wine stains. He says his results are better than the research shows. Most kids get marked improvement and that's what he expects for Enler.

As of now, we'll be heading to PCH on October 21st around 4:30 in the morning for Enler's treatment. Its comforting to me that I'm familiar with the facility (as I did my third year rotations there) and I've met most of the anesthesiologists! We'll keep you posted!