What about lasers?

Been there, done that.

When we first realized that Anikka’s congenital nevus wasn’t going away on its own, we looked into the various options available. Silja found loads of websites and journal articles on congenital nevi, including some studies that showed patients whose nevi responded remarkably well to laser treatments. The idea of our infant daughter going through surgery and the known complications of the procedure (certain scarring, the possibility of deforming her eyes, nose, and mouth as a result of the excision, and the inherent danger in any surgical procedure) made laser seem like the way to go.

Anikka resting after laser treatment.

We first scheduled a consultation with a doctor at Oregon Health and Science University (OHSU) in Portland, Oregon. After examining Anikka’s cheek (and learning that we would be paying out-of-pocket), he refused to attempt the therapy.

Our next consultation was with Dr. David Goldberg in New Jersey (http://www.skinandlasers.com). It seemed that Dr. Goldberg’s name was attached to just about every journal article on the subject of using lasers to treat congenital nevi, so we made an appointment to see him and scheduled the flight. Dr. Goldberg’s assessment was very optimistic. Though we couldn’t guarantee results, he was confident that laser treatment would have a positive effect.

Unfortunately, one of the problems with using lasers to treat this time of condition is that you can’t know beforehand exactly how a particular nevus will respond. We estimated about 6 treatments in Anikka’s case and, at about $3-4,000 each not including travel expenses, we decided to look for someone closer to home.

Luckily, someone eventually told us about Dr. Suzanne Kilmer in Sacramento (http://www.skinlasers.com). We drove down to California for a consultation and, as her schedule allowed it on short notice, Anikka’s first treatment. As Dr. Kilmer performed the procedure in her office and without hospitalization, the cost per treatment was much less (about $500). Furthermore, the trips to her office were much easier to handle than the flight to New York. Anybody who has even flown with a small child can tell you that a 75 minute flight is much, much more palatable than the 7 hour red-eye variety… And thanks to Southwest Airlines’ frequent flights from Portland to Sacramento, we could fly down in the morning, see the doctor in the afternoon, and be home before dinner. Certainly made for a long day, but it minimized our costs (no hotel fees, rental car only needed for one day, and only one day of work missed).

We can’t emphasize enough how fantastic Dr. Kilmer and her staff were. They all doted on Anikka and went out of their way to make the experience as easy on her as possible. Dr. Kilmer was very open up front about admitting that there were no guarantees for success and made no promises. We insisted on trying, though.

We kept up the treatments for several months, at first flying down every four weeks or so, then, as our funds ran out, once every couple months. Unfortunately, though we’ve tried a few different types of lasers, we haven’t seen the kind of progress we originally hoped for. Furthermore, the stress of the long days was beginning to wear us down. For example, a typical day went something like this:

• Wake up at about 4:30am.
• Shower and dress ourselves.
• Wake Anikka at about 5:15am.
• Rush to airport for 7am flight.
• Arrive in Sacramento around 10am.
• Rush to car rental offices.
• Drive immediately to doctor’s office for 11am appointment, grabbing late breakfast if possible.
• Slip Anikka a small valium about 20 minutes prior to arrival.
• Apply topical anesthetic to Anikka’s cheek.
• Give Anikka doses of Vicadin and Ibuprofen.
• Wait around office for drugs to take effect.
• Treatment.
• Schedule next appointment.
• Rush back to car rental location.
• Drop off car and head to airport.
• Kill anywhere from 30-90 minutes waiting for flight, eating late lunch.
• Catch 2:30pm flight back to Portland.
• Land in Portland around 4pm.
• Walk in the front door at about 5pm.

Couple thing of note there. You might notice that “lay Anikka down for nap” is missing from that list. On a typical treatment day, Anikka’s pain medication would usually start wearing off right about the time we arrived at the airport for the flight home. I’m sure you can imagine how even a 75 minute flight with a two year old girl who missed her nap and just had strange people apply a laser to her face might be.

Ani, one day after laser treatment.

Also, the treatment process itself isn’t exactly peaches and cream. After drugging your toddler daughter and waiting 30-60 minutes for the medication to really kick in, one parent sat in the chair with Ani on his/her lap. That parent had to restrain Anikka’s arms and hold her down while she struggled as hard as she could. Meanwhile, an assistant covered Anikka’s eyes and tried to keep her head from moving as she thrashed about. Finally, the doctor had to carefully treat the nevus with the laser.

Though the process only lasts a few minutes, it feels like a lifetime. The smell of your child’s burning flesh, the blisters and scabs that appear immediately after the procedure, and hearing your child screaming to be put down are heartbreaking. Even the doctors and assistants dreaded the procedures, and the process got worse each time as Anikka began to recognize the office and treatment rooms.

We still believe that laser therapy might be a good option for some cases, but it’s clear to us now that Anikka’s nevus isn’t one of them. Unfortunately, it’s a lesson that cost thousands of dollars and nearly two years’ time to learn.