PWS/KTS - Infant - What to Expect your first visit
My wife and I received some great help and support from the community here 5 months ago when our daughter was born. We’ve been watching the forums, but haven’t contributed much over the past months as we’re really at the beginning of this process. Well, we had our first visit with a specialist, and thought that a rundown of our experience might help others just starting to explore PWS’s and KTS.
Any comments, or corrections to info are appreciated. We were surprised that the specialist was pushing laser treatment out by years (she even mentioned 10 years at one point). We hope that she is accurate.
Backstory: Our daughter was born 5 months ago, perfectly healthy, large port-wine stain covering her outer right leg, bit of back, and some inside leg. Contradictory information from pediatrician so we booked a specialist appointment. Took till now to meet with the specialist.
Disclaimer: This is a second hand account by memory, and not direct quotes. We are by no means speaking for our specialist.
- the normal meet and greet with backstory. Why we booked, what we’re looking for.
- the doctor physically examined our child. This was a careful examination where she was looking both at the breadth and depth(color, signs of abnormalities deeper in the skin) of the stain.
- She then looked for outward signs of abnormalities (KTS). We could see her checking leg length and circumference from the front and back. She didn’t use any measuring instruments. It was just by eye.
- The doctor then briefly reviewed the case. Definitely a PWS, no outward signs of KTS, signs could show up at any time into teens (generally the earlier the more serious) so we should book yearly appts with her (6 months for the first one).
- a nurse came in to take informal pictures with a digicam for future records.
- She then started to talk about options, which prompted a lot of QandA.
Q and A Session
1) Imaging: She didn’t recommend imaging at this point. Why? No outward signs, imaging at this point involves sedation for the child which is more serious. As there isn’t really anything preventative that can be done, imaging can wait until symptoms or our child is older.
2) KTS Prevalence Question: We’ve been told KTS is very rare, but then so too is this kind of PWS. How worried should we be? [there was some hesitation as she thought]
Answer: I see a couple children each month with a PWS like this, but only a handful have developed KTS. [This was probably the most unsatisfying aspect of my visit. I was surprised a hospital couldn’t say we’ve seen x patients with this symptom and y% developed KTS. What does a couple and a handful mean? This could be anywhere from 1% to 20%? With everything else in our thoughts, we didn’t press on]
3) Laser Treatment: At this young age, it would involve general anaesthesia as it is painful. [at any rate, as we found, where we live there’s a 2-year waiting period anyways]. Treatment for leg pws are not always as effective. Of course, we could pursue it, but her opinion is there’s no advantage in outcome vs. waiting until the child can decide for herself. [With a two-year wait period, we went ahead and booked a consult anyways. We hope her assessment is accurate, we could look for a private laser clinic, but it sounds like waiting till our daughter is 2-1/2 won’t affect outcome. Fingers crossed]
Q: I’ve read that the earlier the treatment, the better the results, down to 6 months. Should we push for treatment [I had read a study to this effect]? A: There have been some studies demonstrating that, and some not. She was chatting about this with an expert from NY and the consensus seems to be that there really is no conclusive evidence that early intervention helps (whether 6months or 6 years).
Q: I’ve heard general anaesthesia in childhood can have harmful effects [ I read a study]. A: Yes, there have been studies, but they mostly looked at older drugs. No evidence that newer drugs do [or don’t].
Q: Will laser treatment have any effect on KTS A: None whatsoever. The problems caused by KTS are deeper in the skin.
4) Misc Q: Anything else we can do? A: Not really, just monitor visually as she develops, make yearly appointments, book something sooner if you see a visual indication of KTS.
Q: What changes can we expect to the PWS over time. We’ve heard that if untreated or untreatable the colour and texture of the area can change. A: Yes, it can. It will probably get darker, but beyond that it can follow a different course for different people. Some of the more advanced cases though, you’re looking decades out, not in the next few years.
Thank you so much for writing this up! This is very informative.
It looks to me like you've covered most of the bases. Good questions to ask and good answers, too.
Thank you for sharing. I do not have personal experience with PWS on the body or limbs, however my son has had multiple treatments for his facial PWS.*
Sounds like you have asked all the right questions and have the best answers available from your doctor. I've had similar discussions with my son's dermatologist.*
This forum has been helpful to me in taking into consideration aspects of treatment that are more personal and individual in nature. Keeping in mind the risks of anesthesia, we decided to start treatments when he was an infant. His PWS covers half his face and felt it was best to treat aggressively to avoid as much of the psychological impact that a facial birthmark can have. Many of the heartfelt contributions here played a role in that decision. I may have come to a different conclusion had his stain been on an area of his body that could be covered with his clothing.*
The skin after treatment is tender and may swell. That has been our experience. *Being on my son's face, healing as been a relatively smooth process. I only offer him food that is easy to chew, not too messy to avoid wiping the face, and moisturize often. I'm trying to imagine how difficult it would be to keep an energetic crawler or toddler from aggravating the skin. That part of the process may be easier if you wait until she is old enough to understand that post op is a time to lay low and watch a lot of t.v. while covered in a coat of Aquaphor.*
All that being said, I would still make the appointment with the specialist and have things lined up so that you are not stuck on a waiting list when you feel that it is time to start treatment.*
Good luck and I hope this helped.*
Thanks Missy, and Kelmel for sharing your experience,
You brought up a point we hadn't really thought of, which was the healing time and care after each laser session. Trying to keep a crawling toddler off an entire leg would be a challenge. I think, as you suggested, we'll definitely make the appointment though.
My 5 month old daughter also has a PWS on her entire left leg. We have done 2 laser treatments so far, at 2 mo and 4 mo and soon at 6 mo. The first 2 she had a topical and honestly it is very difficult to go through. We are choosing to put her under starting at the 6 mo appt in a few weeks. The healing, however is very quick and she does not appear to be in pain after. Ask your Derm. To let you feel the laser on your hand. That is helpful.
I am wondering how your daughter is doing with the treatments now? My daughter was born 5 weeks ago and has a PWS on her entire right leg, chest, back and butt. The doc does not see any outward signs of KTS which is reassuring. We will start laser treatment soon and I am worried how it will go since her PWS is so extensive. I hope your daughter is doing well!
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