PWS on back and leg-infant

samsherman · #1 01-20-2010, 05:38 PM

Hello,
Our almost 10 month old daughter has a PWS on her lower back and leg and I would really like to connect with others who may be in the same position. She has seen an orthopedist and had an ultra-sound which showed what they expected, a cppillary malformation. She will be having an MRI in the upcoming months and we will be seeing a vascular specialty clinic. We are now concerned that this may develop into KTS, something we know may not be evident until she is a bit older. Any feedback on what we might expect and how others have managed would be greatly appreciated!
Thank you!
Samantha

missy · #2 01-20-2010, 09:58 PM

Hi Samantha and welcome!

Where are you located? Other parents will be around soon to share their experiences!

Just can't stand to leave a post unanswered, even when I have nothing to say!

Missy

samsherman · #3 01-21-2010, 03:34 PM

Thank you Missy. I do hope to hear from others. We are in NY.
Samantha

nickbar · #4 01-28-2010, 12:27 AM

I would recommend contacting Dr. Roy Germonous' office (he is in our listings) If you have any questions please feel free to email me

Merereb · #5 02-22-2010, 11:15 PM

Just wanted to say hello. We have a one year old with a PWS, lower back, bottom, diaper area, dappled on back of right leg and foot. We've been told it's all cosmetic, but I won't believe that until she's grown and legs are semetrical, etc. We're holding off on the laser therapy for now. I struggle with that daily. Just wanted to let you know, there are other parents in the same boat.

Feel free to contact me if you'd like to communicate further.

Meredith

samsherman · #6 02-23-2010, 05:49 PM

First, thank you for responding. There does not apprear to be frequent posts here and I was so glad to get your email. My question to you is, who told you it was just cosmetic? Our pediatrician from the beginning told us that and it was not until we saw a Derm. who specializes in Vascular anomolies that we learned it may be a lot more. I have heard of so many people being mis-diagnosed (do not get me wrong, I am not suggesting that is you). Just wondering about who you have been followed by. Has there been any testing (ultrasound, MRI)? Just curious.

My email address is samdsherm@yahoo.com. Feel free to write to me directly. Where do you live? Hope to hear from you and all the best!
Samantha

Quote:

Originally Posted by Merereb

Just wanted to say hello. We have a one year old with a PWS, lower back, bottom, diaper area, dappled on back of right leg and foot. We've been told it's all cosmetic, but I won't believe that until she's grown and legs are semetrical, etc. We're holding off on the laser therapy for now. I struggle with that daily. Just wanted to let you know, there are other parents in the same boat.

Feel free to contact me if you'd like to communicate further.

Meredith

lpepp · #7 02-24-2010, 03:51 PM

Hi All,
You guys are not alone, my 2 1/2 year old has a large PWS on his torso, strictly on his left side. Doctors also said this was a harmless birthmark since birth. Recently, he has had 2 instances of scabbing on the dark,purple area, about 1mm or less in diameter. After this being dismissed by the first pediatrician, we are now going to have a MRI on his spinal cord to see if there are any other abnormalities or issues that might affect him later. Apparently there are other complications that CAN come with PWS.
Has anyone experienced or read anything remotely similar to this?
Thanks,
Leah

samsherman · #8 02-24-2010, 04:13 PM

Hi Leah! So glad to be hearing from you all. What we have learned (well, we have learned a lot, but this most importantly) over the last several months is to not allow your child to be dismissed as simply a cosmetic issue. INSIST on seeing a specialist and being evaluated. We now know how many other complications may arise and are now educating ourselves and being followed by specialists. Our daughter is having her MRI next week to assess her spine. Does your sons PWS cross his spinal cord? Our daughters does slightly which we have been told could cause her to have a tethered cord. We are anxious but hopeful that this is not the case. Anyway, it is great that you are getting additional work-up. Where do you live? Feel free to conatct me at the email above. Look forward to hearing from you and best of luck.
Samantha

lpepp · #9 02-24-2010, 04:17 PM

Hi Samantha,
We also have an MRI scheduled. his does not cross the spine or even the line of symetry in the front of his body. it is contained above the belly button and below the under arm. Yes, the more I am reading the more educated I am getting on how easily these are misdiagnosed and dismissed by doctors. I sure hope you get great news next week, please post what you find out. We will keep you guys in our prayers.
Thanks,
Leah