To stop or not to stop

kelly28 · #1 04-16-2008, 05:21 PM

My son is 25 months old and has a left-sided facial PWS. We started treatment at 14 months old and he has had five treatments so far. After the first two, I noticed it was a lot lighter and was really encouraged. It seems like every treatment after that has caused no lightening and now I'm wondering if it's even making it darker. His birthmark is located under his eye, on his upper lip and down the side of his cheek. The upper lip has faded a lot, under the eye looks slightlly lighter, but it's his cheek that looks like it's not improving at all. I've even noticed that I can still see marks left from the laser treatment he had seven months ago. (It went way outside the visible borders of his PWS) Now I'm worried that if we keep having these treatments we will make it worse instead of better, especially since the skin that looked unaffected before now looks blotchy from laser treatments.

In addition to these concerns, my son is now terrified of anything that resembles a doctor's office. He cries through every doctor's appointment, even simple checkups. Last time we went for laser treatment he started crying as soon as he saw the building. Because he cried for so long before the treatment he woke up from anesthesia congested and it scared me. Now I feel like I'm compromising his health. He started getting Versed at his last treatment which helped after it took affect, but all the crying he'd done up until that point really congested him.

Is there anyone out there who has had similar experiences who could offer some encouragement or advice? I'm wondering if it would be in his best interest to stop at this point. Doc advises us to keep going for max result, but there are no guarantees.

missy · #2 04-17-2008, 11:48 PM

Sounds like you have to weigh the words "max result." I mean, it sounds as if you feel the cons are really outshining the pros right now.

I think my suggestion would be to get a second opinion. Do you think your current physician might be too aggressive?

Missy

grumper1 · #3 04-19-2008, 06:01 AM

kelly28, I sent a message to your private mailbox on this website.

Zelda300 · #4 04-23-2008, 03:57 PM

Kelly,

I know these decisions are so hard. I have a 10-month old baby with a pws on his face. We've had three treatments so far & I'm not sure it's having much of an effect. I have a five-year-old daughter too who for other medical reasons went through a long period where she was afraid of going to the doctor's office. It's such a personal decision & I don't think the doctor should dictate it. I've found it very hard to stand up to doctors who are dismissive of my daughter's emotional reaction. They've said things like "she won't remember". But my daughter, who is almost six, remembers very well procedures that she experiened when she was barely three. So, with my baby, I've decided I'm going to keep doing the treatments until it gets to the point where he's exhibiting anxiety before the treatments. Right now, he's too young to remember, but I know in a few months that will change. When we hit that point, I'm going to stop doing treatments until we can have a conversation about his choice. This could mean waiting until he's a teenager. For me, it's a matter of balancing the risks of general anesthesia versus our child's emotional health & developing fear of doctors offices/trauma versus the severity of the pws. For me, the pws isn't bad enough to warrant the risks of general anesthesia or developing a fear of doctors. Remember this is all elective. I know it's hard to keep that in mind when we're swept into the medical world. Hang in there & good luck.

Leona

nickbar · #5 04-23-2008, 05:31 PM

I would like to recommend contacting Dr. Nelson thru the ask the expert. He has been able to get more clearing on pws that are subborn. He customizes the laser (he has many lasers) used specific to the patients' birthmark. Dr. Nelson treating my son's hemangioma with two different lasers during the same session.

C

Melaina'sMommy · #6 10-08-2008, 04:04 PM

I know it's been a while since your post but I just decided to get back on the discussion forum after a few years of being away and just saw your post. My daughter sees Dr. Nelson and has had 18 treatments. At first, the results were great and we were seeing probably 50% lightening. Now, he is working on the smaller vessels and we are only seeing about a 5% lightening which is frustrating. Her pws is left side, cheek, midline lip, and ran up her eyebrow to her forehead/scalp. You can no longer see the pws anywhere except her cheek and lip which are the hardest areas to clear. I've considered stopping too since the lightening is so slow but we have come so far and Dr. Nelson can measure the progress and is trying different lasers so, for me, I'm going to hang in there til I can't take it anymore. My daughter is 4yrs old now and does pretty good with the treatments. She becomes anxious and cries a little but understands it as a part of her life and she doesn't know anything else. We don't use Versed but I have heard it can help to forget the experience. Hope this helps.

tess · #7 10-10-2008, 07:32 PM

It sounds like your son's PWS is in the exact same location as my daughter's. We have been told that that area of the face is resistant to quick treatment and can take a long time to really, really lighten. However, at our doctor's office waiting room, we have seen kids (3-4 yrs old) whose similar PWS are amazingly lighter, so we remain quite hopeful.

I have many times wished there was a "quick fix" for this condition. I am very much a type A personality, so I like to see results! One of my greatest personal challenges has been to put myself in a "holding pattern" and accept that this process will take years, rather than weeks or months.

My daughter (1 yr old) has had 11 treatments so far, and we've seen a great deal of lightening... but we have a long road ahead of us yet. Some treatments yield a significant amount of lightening, and others only a slight amount... but I know that, regardless of how dramatic each treatment's results are, we are slowly but surely heading in a positive direction.

I would echo those posts who have encouraged you to seek a second opinion. We did that with our child, and it was a huge encouragement and help to have the input of a new doctor... meeting with our second-opinion doctor helped restore the emotional energy I needed to continue with the treatments.

Even if you decide to discontinue treatments for awhile, you can always start them again at a later date. Perhaps talking with a new doctor will help you sort out if that is a good option for you and your child. Good luck, and blessings to you!