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-   -   Question for Rhonda w/12 yr. old son (http://birthmark.org/board/showthread.php?t=3570)

grumper1 10-27-2009 08:14 AM

Question for Rhonda w/12 yr. old son
 
Hi Rhonda,
Would you mind sharing more about your recent laser experiences with your 12 yr. old son? My 2.5 year old son has had nine treatments and we've decided to move him to a maintenance schedule (i.e. one or two treatments per year). I wish I could peek into the future to learn more about what to expect with my son's treatments going forward. The fact that you've been at this for 11+ years makes you a perfect resource of information for mom's with younger children going through laser treatments. I've been wishing I could talk with a mom in your situation. Would you mind sharing your experiences?

- how light did your son's PWS get before you moved to maintenance treatments? (Obviously, it's hard to describe in writing; but I'm just wondering, did you get complete clearing, cleared to light pink, etc.)

- how often is your son treated at this point?

- how/when do you decide to have him treated? Do you look for darkening, or are you on a set schedule?

Thank you for sharing your insight.

Lynn

rhonda 10-27-2009 03:34 PM

Hi Lynn,
Thank you for asking these questions as I hope my answers can help you and others in your situation. I have had many years to mull over the best treatment plan for Joey and our family. When we first started treatment 12 years ago it was thought that anywhere from 15-20 treatments would totally remove the port wine stain. Years of research have proven that there is no permanent cure or removal and life long maintenance treatments are necessary. Given that I decided I needed to adjust my expectations with the progress. I went from wanting complete removal to thinking that light pink was ok but I definitely want to prevent growth into the bone, hypertrophy etc. Joey has had on average 4-5 treatments per year with a couple of years in there where we took a break and maybe had 1-2. I decided on this break because we used to travel in and I was happy with his progress. This year Joey will have 4 treatments but next year I'm going to squeeze in a 5th and that is due to the fact that puberty is a critical time and hormones are vaso-dilators and if we're going to see growth this would be the time. Right now we work around school vacations so that he has time to heal before returning to school. In elementary school though I would send him back on Monday after a Friday treatment with a big hat and his teacher would keep him out of the sun. I did this because kids are much nicer at that age and I would talk to the class before, bring a picture and let them know what to expect. I have had some adults on this board say that I don't know what it's like to live with this and going out in public is difficult especially after treatment. But I want my son to live his life regardless of what his face looks like and if he wants to go to the store or be out with people he has the confidence to do so. Now middle school is a different story, kids are more critical so I don't push him for treatments during school. We are getting to the point though where he will want to spend spring break with friends at the beach or being outdoors and at that time we'll have to adjust and see where we can fit it in. My feeling at this point is that we'll keep him on a routine schedule of 5 treatments/yr until he gets through puberty and then move him to a maintenance schedule of 1-2 if that's possible and he hasn't experienced any significant growth or darkening. The bottom line is there isn't a perfect formula!! Every child is different. I happen to think Joey's PW isn't as severe as some I've seen but I'm not sure it won't change for the worse. You can't predict the future in this situation, all you can do is go with your gut and if you feel being on a maintenance schedule works right now then go with it. Just be open to the idea that you may change this schedule at any time. Good luck and feel free to contact me anytime.


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