5 mo. old infant w/PWS

grumper1 · #1 09-08-2007, 06:31 AM

My pediatrician initially diagnosed my son's PWS as an angel's kiss. Now, at 5 months, she changed the diagnosis to a PWS and he has appointments with a pediatric dermatologist and an opthalmologist. I'm concerned because the appointments are weeks/months away (those were first available). I would appreciate any comments/insight/reassurance/guidance from anyone who has an infant being treated for a PWS.

His PWS is not large. It is located at the inner corner of his eye and goes out to the bridge of his nose. It extends from his eyebrow down his nose about 1 inch.

Right now I'm most curious to know:

1. Am I missing a critical window of opportunity by not having his treatments starting immediately? Our initial consultation with the pediatric dermatologist isn't until October 31. By then he'll be 7 months old. I will drive to another county if it's critical that we get started earlier on treatments.

2. His glaucoma screen is on September 21. Again, should I be aggressively searching for an earlier appointment? Can glaucoma advance that rapidly?

3. His pediatrician does not recommend having the MRI to rule out SWS at this time because of the requirement for general anesthesia. Does this sound like a good call; or should I seek more advice on that?

As you can imagine, I'm very stressed. Thank you for any help you can provide.

Lin

missy · #2 09-08-2007, 11:01 AM

Lin,

This is just my opinion, but if you are happy with the pediatrician's advice, I wouldn't push right now for earlier appointments.

Write to Dr. Comi, our SWS expert: http://birthmark.org/experts.php

Try not to be so stressed!

Missy

zuzuspetals · #3 09-08-2007, 08:45 PM

My daughter is almost 7 months old, and has a facial PWS. I'm no expert, but I can give you my personal experience/opinion. Her birthmark is larger, but in the same area near the eye and nose. It just doesn't extend all the way up to the eyebrow. Our pediatric dermatologist is not recommending an MRI at this time because of the location of her birthmark, but we have had a few appointments with the opthamologist. I think that as long as you have the eye looked at and monitored, then you will be fine to wait a bit for the skin treatment. You are still getting in the game very early! All of my doctors have stressed the importance of screening the eye for glaucoma above the issue of the skin itself.
I do recommend writing to the SWS expert for any questions you have. I have written both the PWS expert and laser expert, as well as the developmental expert, and they have all been extremely kind and helpful!
Good luck - it will all work out in the end, so try not to worry yourself too much (I know it's hard.).

zuzuspetals · #4 09-08-2007, 08:47 PM

Also, I think that your appointment isn't too far away for the eye. I remember worrying myself to death about that, too. But in the meantime, you can just look out for signs of glaucoma in that eye, such as 1.) hypersensitivity to light, 2) excessive watering of eye, and 3.) cloudy appearance of eye.

grumper1 · #5 09-09-2007, 05:17 AM

Thank you to both of you for your quick replies. I was also fortunate to get a speedy response from one of the experts listed on the VBF website. I feel much better about things today. I'm glad we're finally moving in the right direction now that we have the correct diagnosis.

Zuzupetals - the information you shared is very helpful. Yes, you are right, it is so easy for me to get wrapped up in the cosmetic treatment while his eyesight is much more important. Thanks for reinforcing that fact. I'm glad his eye appointment is just two weeks away. He hasn't displayed any of the early glaucoma symptoms you mentioned; so I'm hoping we're safe so far. Has your daughter had a laser treament(s) yet? If so, is she put under general anesthesia? How close to the eye can they get with the laser? I'm curious to know if they treat the skin right up to the eye or do they hold back as not to get too close?

zuzuspetals · #6 09-10-2007, 09:13 PM

In answer to your question, my daughter has had 2 laser treatments so far. They were both under general anesthesia delivered via mask (not I.V.) She has had 3 eye examinations, too. The first one was routine, the second one was due to watering/gunky eye (turned out to be a tear duct issue), and the third one was just done at the same time as her laser treatment under general anesthesia. This allowed the opthamologist to get a good and accurate pressure reading for her eyes.
The doctor does get right up next to the eye during the laser treatments. Our doctor inserts an eye shield to protect the eye during the procedure. The worst part about the treatments is the way Josie looks - it can be shocking. But, she is quick to heal, and she is always up and energetic and back to normal within a few hours of the procedure. Here are some pictures of her last treatment.

You can see that the bruising looks pretty bad. However, it doesn't seem to bother her one bit (as you can see from her smile)!

grumper1 · #7 09-14-2007, 06:33 AM

Thank you for sharing your experiences and photos. Your daughter is adorable. Yes, her smile is fantastic and I think I see two little teeth! Your responses to my questions help more than you know. Best wishes with your daughter's treatment.

kcougarcamp · #8 11-15-2007, 04:24 AM

First, take a deep breath. I think that we all worry way more than we need to because its our precious baby. My daughter was born with a PWS that covers the left side of her face around the eye, check, nose, mouth, and stretches to the ear. She also has a lot of Hemangiomas and some stork bites. I call her the birthmark kid. My doctor wanted to rule out SWS so we had an ultrasound done at 1 week but he said that it wasn't anything to worry about and we didn't need to get it done right away. She also got tested for glaucoma but again it didn't need to be rushed. She will undergo her first laser treatment on friday at the Beckman laser institute and she'll be almost 8months old. They won't do it on babies until after 6months because they use GA and they don't want to use it on babies under 6months. And I had to wait until I could switch insurances so that it would be covered. I know that they have better results when you start before 1 year so you should have no problem starting the treatments before he reaches a year old. Don't worry about starting so late I'm sure everything will work out fine.

clong33 · #9 11-20-2007, 07:15 PM

Zuzu, your daughter is beautiful! My daughter is six months old and has a very similar PWS except that its on the right side of her face instead of her left. We are scheduled for her first laser treatment at Childrens Hospital Boston on Monday. The appointment was made four or five months ago but, like kcougarcamp, we were told we had to wait until she was six months old due to the GA. It seemed at times like we were waiting forever and I just wanted to get it over with. Now that the day is upon us, my anxiety level is sky high. All of the words of encouragement here are invaluable. Thank you.

zuzuspetals · #10 11-22-2007, 12:31 AM

clong33, Let us know how the treatment goes - I'm sure everything will go just great. I remember that wait for the first treatment feeling like forever, too. But once you get going, it seems like there is no time at all between treatments!
I think we should all take a moment to reflect on how lucky we are to have beautiful little ones in our lives, birthmarks and all. Happy Thanksgiving, everybody!