2 month old baby with large PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-20-2012, 01:35 AM
lillyyyy lillyyyy is offline
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Default 2 month old baby with large PWS

My 2 month old son has a large PWS covering most of his left body part, right leg, and left cheek. We are going to see a dermatologist tomorrow who will most probably recommend laser treatment.
This came out as a huge shock to us after a delivery filled complications. Additionally, we are new parents living here by our selves (Our whole family lives out of the country).
I read a lot about the treatments, but am still not clear about the recovery process after each laser session. Is it painful? Is it like an open wound that might get infected?
The reason I am asking is because we registered him to a day care. He's supposed to start in a month, and I'm supposed to get back to work. I can't
imagine going to work knowing he's in pain..such a little baby. I understand life changes when you have a child, and I am willing to do whatever it takes. I just need a better understanding of the healing process for a small baby and what it requires.
Thank you.
Lilly
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  #2  
Old 04-20-2012, 11:20 AM
missy missy is offline
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Hi and welcome!

Congratulations on your new bundle!

Wait and see what the dermatologist says. He might not recommend treatment until 6 months old. Find out what kind of laser he would use, as well ... different lasers will make a difference.

Does your job have sick or personal days available? I can't imagine them not giving you a day or two off for a child you need to care for.

Let us know what the doctor says today!

Missy
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  #3  
Old 04-21-2012, 05:48 AM
kelmel kelmel is offline
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Hi Lilly,

My son started treatments as an infant. Our doctor typically schedules the youngest children early in the morning, giving them most of the day to recover. By the next morning, aside from the purpera, he has been mostly back to himself. Ideally, I prefer to schedule the treatments on Fridays giving him the weekend to rest. Although, it has not always worked that way and he did have to return to daycare the next day. His caregivers would dutifully apply Aquaphor to his face and give him lots of love. He did not seem to mind getting back to his regular routine.

You will need to take a full day off from work the day of the procedure. For the first few treatments, you may want to wait and see how Day Two goes. One thing that I have been told and am starting to realize is true is that it looks much worse than it feels.

Your doctor will be able to describe how the skin reacts and may have photos that will give you an idea. It is a little shocking to see your child after the procedure, so some advance warning may help you. And again to remember that it looks worse than it is. My son's post op crankiness seems to be due to the anesthesia and hunger, not so much the laser. I have known adults who do not require general anesthesia due to location of their PWS and don't even bother with local anesthesia. It can't be that horrible if someone would voluntarily choose to do that.

Good luck,
Kelly
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Old 04-21-2012, 02:13 PM
KatieG KatieG is offline
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My daughter had treatments on her leg. She came home and never was bothered by anything. There was never an open sore, her leg just looked discolored. Good luck!
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Old 04-23-2012, 05:21 AM
lillyyyy lillyyyy is offline
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Default Thank u

very much for your responses. It looks like my sons PWS are not PWS but actually CMTC which I keep reading about, and it feels like so much worse...my god I need to find a place in my heart for hope.
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  #6  
Old 04-23-2012, 02:50 PM
abatie abatie is offline
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CMTC only seems worse because so little is known about it and laser does not help. I promise that the information I have given you about the CMTC group will be of a huge benefit to you. That is why the Facebook group of families is so good because we provide a wealth of knowledge and experience to each other. You find very quickly that someone else has had a similar experience and you don't feel alone.
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Old 04-27-2012, 01:22 AM
swaltjen swaltjen is offline
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Quote:
Originally Posted by abatie View Post
CMTC only seems worse because so little is known about it and laser does not help. I promise that the information I have given you about the CMTC group will be of a huge benefit to you. That is why the Facebook group of families is so good because we provide a wealth of knowledge and experience to each other. You find very quickly that someone else has had a similar experience and you don't feel alone.
Abatie, can I view the CMTC Facebook page, or is it private? My son was diagnosed with PWS almost a year ago, and I still wonder if maybe it's CMTC. I was wondering if maybe some people post photos and I can compare... I know every case is different, I just haven't seen any other PWS like my little guys. Thank you!!

Sarah
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  #8  
Old 04-27-2012, 02:46 AM
abatie abatie is offline
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I can't remember because I joined a really long time ago. If you do have to join it is the CMTC international president that runs it (his name is Lex). If you search CMTC on the Internet you should also be able to find images. Do you have any pictures of your son? I am pretty familiar with most of the pictures out there since I am in contact with several families. I could at least give you some idea if this is something to check into further.
Alison
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Old 04-28-2012, 12:56 AM
swaltjen swaltjen is offline
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sorry to take over your post lilyyyy!

Alison, here is a picture of my little guy's leg. the PWS goes from his hip down to his toes. he is 15 months now and i really haven't noticed much of a change in it's appearance since he was born. since it's coming on a year since we've had the diagnosis, we'll be going back soon to have it looked at again, but it's nice to have another opinion (from an expert CMTC mom )

Thanks for your time!

Sarah

[IMG][/IMG]
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  #10  
Old 04-28-2012, 01:53 AM
abatie abatie is offline
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Does it change color when cold or when he is upset? How about at bath or when running a fever? Is there any difference in the size of his legs in either length or girth?
Alison
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