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newgramma 01-14-2013 11:22 AM

greetings and questions
 
Hello,

What a wonderful community!

The reason I found it is because my granddaughter was born Monday, Jan 7 and the attending pediatrician has scared the pants off us all.

Our granddaughter was born with extensive red birthmarks. I'm not qualified to estimate,but probably over 50% of her body. Bc some marks were over her eyelid, she gave cautionary instruction about glaucoma, syndromes, etc. We have been internet junkies since.

When the neonatal pediatrician examined her, she said, "I thought I was here to see a PWS... this is like no PWS I've ever seen." An appt with a pediatric dermatologist is scheduled for tomorrow. Of course, in the meantime, we are pouring over the internet!

She has spots on her nose (3), across her left cheek, from her left temple and across to the back of her head. There are spots on her left hand, on her chest, most of her back, all of her butt, almost her entire right leg. It's a lot.

However, if she is calm and warm (not hot) they are invisible. It is only when she cries that they turn red. Quite red, with specific limits/borders. She seems to be strong (already lifting her head and shoulders 1st day!). She is quite solid and was 2 days overdue (not unusual).

Zero complications otherwise.

I will post pics as soon as I can get daughter to cooperate. She is in panic/ignore mode right now. I am too, kinda, but feel a responsibility to research preemptively and prepare for the future if the first pediatrician's cautious appraisal was correct.

I think everyone in my family had angel kisses, stork bites, moles and cafe au late. We are all western european descent, non-Hispanic. I have had numerous capillary "thingies" (like pinpoint dots that have come and gone) throughout life, and my hubby has a little genetic redness on his cheeks/jowels. Daughter (mother of baby) has hives/mottling when heated or under duress.

I can't find any instance of this level of extensive coverage of a birthmark!

Perhaps my searches are sophomoric, and that's why I can't find anything like what our new grandaughter looks like?

New Gramma (3x)

abatie 01-14-2013 04:32 PM

Pictures would be helpful! I am wondering about CMTC because of the change with temperature. PWS can be very extensive. CMTC can also be very extensive.

newgramma 01-14-2013 09:08 PM

birthday pics
 
5 Attachment(s)
Pediatric Dermatologist visit is over. She said the blotches share no characteristics of PWS. HOWEVER, it is SO UNCOMMON she requested permission to publish photos.

This by no means shows ALL the patches/coverage ... I don't have a pic of her back, which is like 70% reactionary and includes her entire buttocks.

One pic almost shows her right leg, which is completely effected.

Might be of interest to you... just let me know.

swaltjen 01-15-2013 03:35 AM

Congratulations on your new granddaughter! She is a beauty!

I hope you and your daughter find some answers soon, but with all honesty it might take a while.

My 2 year old son was born with a red birthmark affecting his right hip/leg all the way down to his toes. His is reticulated, so it's not a solid birthmark, some "good" skin shows through. When he was younger his also almost disappeared when he was warm, but turned dark red when he was cold or was crying.

For now his diagnosis is a port wine stain, however his doctor is keeping an open mind that it might be CMTC. His PWS does seem to be darkening, even when he's warm it doesn't disappear like it used to.

For now, we have decided against laser surgery. I keep a close eye on it, and we'll see the doctor annually unless something changes.

Also, you may want to check with your local hospitals, especially if you are near a larger city. The 2 major hospitals in our area have "Vascular Anomolies Teams." I really like and trust our pediatrician, but she didn't even know that these types of doctors were available in our area!!

I wish you and your family the best of luck! Keep us updated!!!

Sarah

newgramma 01-15-2013 11:17 PM

My sincerest hope is that you will find that you, too, have a child with a ridiculous amount of "angel kisses".... (for some reason, that phrase tickles me!)

Our doc decided with "98% assurance" in that direction. I think the 2% is "just in case" cuz the unlikelihood of a 60% coverage of salmon patch.

She just said "be on the look out" - just in case - of other complications. Covering for potential torts, I'd guess, as many parents wish to blame SOMEBODY.

I am humbly reminded that there is no blame, there is no fault.

Of particular note, the doc said that the fact that the spots blanched made them salmon spots, rather than PWS. Also the fact that they disappeared w/o agitation.

Daughter encouraged doc to publish, as this is so uncommon and she surely can't be the only Mom wondering.... (panicking)


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