PWS on left foot/leg/buttock/lower back - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 06-04-2010, 01:55 PM
Talans Mommy Talans Mommy is offline
Junior Member
 
Join Date: Jun 2010
Posts: 14
Default PWS on left foot/leg/buttock/lower back

Hello. My son who is 5 months old has port wine stains on this left foot, leg, buttocks and lower back. There are lots of small stains. We have been taking him to a specialist who did an ultrasound which came back normal and are now doing and MRI. Both his legs are growing at the same rate. But, they are checking for KTS to cover all the bases. Is there anyone out there that has a child with similar markings? Do they have KTS? When was it diagnosed? I will post pics soon of my sons leg. Any pics would be appreciated. It would be helpful to talk to some parents with a child with similar PWS.
Reply With Quote
  #2  
Old 06-05-2010, 12:24 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,726
Default

Hi and welcome!

Other parents will be around soon to answer your questions and lend their shoulders. I just wanted to say hi!

Missy
Reply With Quote
  #3  
Old 06-06-2010, 04:32 PM
fromhungary fromhungary is offline
Junior Member
 
Join Date: May 2010
Posts: 3
Default

Hi!

My 21 month old daughter has the same type PWS like your son. We will see a specialist on the 7th of July. Both her legs are growing at the same rate. The doctors in our town don't know much about KTS, so they didn't checked it. After I found this website I decided search a specialist. Please write to me what kind of ultrasound was taken? I can send you photos, but please give me your e-mail adress, I don't want to post it on the internet, becasuse of the location (bottock). I hope we can keep in touch. Sorry for my english, I'm not a native speaker. Do you live in the US?
Reply With Quote
  #4  
Old 06-07-2010, 12:06 AM
Talans Mommy Talans Mommy is offline
Junior Member
 
Join Date: Jun 2010
Posts: 14
Default from Hungary

Oh. I'm so glad to have a response from you. My email is mbaker43026@yahoo.com. Yes, I am in the US. The ultrasound was a dopler ultrasound. They did it over his marks. It came back normal and they led me to believe we were in the clear for KTS. But, now they are doing an MRI to look further. Once you email me, I'll send you some pics of my son. We are awaiting a call from the hospital to schedule our MRI. But, they did tell me that they usually notice KTS when children start walking. They seem to have trouble with the leg. Has your daughter been doing okay walking? I hope we can keep in touch. Also, your english is just fine
Reply With Quote
  #5  
Old 06-07-2010, 02:43 AM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

My daughter has CMTC and not a PWS but it is also visible on her leg. She does have limb length discrepency in both length and girth. KTS was considered as another diagnosis but has been ruled out for now. She seemed to have very limited use of the limb early on but now at just about 11 mon. she is showing us that even with the discrepency she is not slowed down. She is crawling quickly, walking along furniture, standing independently. Don't stress about the what ifs unless they happen. I spent months freaking out about her not being about to crawl or walk and it turned out to be wasted energy.
Reply With Quote
  #6  
Old 06-21-2010, 06:21 PM
bcoates02 bcoates02 is offline
Junior Member
 
Join Date: Jun 2010
Posts: 4
Smile Diagnosed with KTS but ...

Hi.. I was clicking around on-line and came across your thread about your son. I have a 3 year old daughter (next month is the big 3) and she was diagnosed with KTS about 10 months ago. I was wondering if we could compare notes...

Here are a few things about my daughter
-she was born by c-section due to being frank breach, at most ultrasounds she was always in this position..ankles by ears...
(my husband feels this is a huge part of her condition.. a malformation of veins. We are not 100% sold on the KTS... i was just doing some research on cmtc)
-The nurses and Dr did not notice the leg/buttock marks till they unwrapped her for her 1st diaper change.
- her right leg just looks pinker/reddish then her left, on the back it gets a little splotchy.. but i would say it covers 90% of her whole leg, it comes up on her right buttock and only 1/2 of her right front area. There is almost a straight line..its very bizarre..
-she did not crawl she scooted on her bottom till she was 22 months
-at 22 months she walked then the next day she crawled
-at about 26 months i noticed the right leg (vascular markings) was about 1/4-1/2 longer and wider. She was diagnosed by a children's physical therapist shortly after with KTS.

I am in Ca, so we were referred to Cedars Sinai to do further testing... they ordered an MRA and we chose to hold off on it. Her leg does not hold her back..she runs.. jumps.. acts just fine and the difference is not significant yet..we are doing follow up xrays with the phys therapist in July, and depending on that appointment we will possibly go through with MRA...

Did you experience anything like this? It would be great to hear back from you.
Reply With Quote
  #7  
Old 06-21-2010, 09:26 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

-When Becca was born the doctor did not make any mention of her leg at birth but the nurse pointed it out to us immediately when I was brought back to my room after her C-section
-her CMTC appears on her right leg. It starts up on her right hip and is on the front side of her leg all the way to her foot. It is for the most part located on the front side but does also wrap around to the back side of her leg.
-Becca's coloration is a whole range of colors depending on her temperature. When she is warm it will sometimes look close to normal and you will just see the blotchy patches' edges. This is only been noted to be this good since the summer temperatures have arrived and is not this good for the most part. When she is cold or gets into the bath tub her leg turns to almost a complete purple color on the front side. Her leg is always splotching.
-Becca did not roll at the normal milestone going both directions (she never did) but did start crawling and is close to walking (she is 11 mon.) She is monitored by a physical therapist once a month.
-Becca's leg girth is about 2 cm smaller on the side with the vascular lesion and she does have some length difference (it has changed a lot in the last 6 months so I am not exactly sure where it is at right now) but it is about 2 cm shorter.
Becca has not had a MRI done. She did have doppler ultrasound done when she was born. She has had x-ray done to also check bone length and also blood flow. I am sure she will have all of this reevaluated later on. She will be a year old in July and we go back to see her specialists the end of July.
Reply With Quote
  #8  
Old 06-22-2010, 03:56 PM
samsherman samsherman is offline
Junior Member
 
Join Date: Jan 2010
Posts: 8
Default

Bcoates02
I am also interested in responses to this and I appreciate seeing your timeline. Our daughter is almost 15 months and has a PWS on her back and leg. She walks well and hit all milestones on time. The PWS was there at birth (although the pediatricians told us it was "just a birthmark"). At this point we are just monitoring her with a specialist. I, along with Talan's mom,I believ, wonder at what point we may know if this is KT. I mean, could she still wake up one day with tissue overgrowth? Anyway, if you want to get in touch, I am always interested in speaking with others:samdsherm@yahoo.com
Best,
Samantha
Reply With Quote
  #9  
Old 08-26-2010, 11:11 PM
bcoates02 bcoates02 is offline
Junior Member
 
Join Date: Jun 2010
Posts: 4
Default Had an MRA & MRI on chest,abdomen and legs

Hello- I posted a blog here earlier about my daughter who was going to be 3, and we had not done any further testing. Well.. this last Tuesday was the longest day of my life. We actually went through with the MRA and MRI, which was closest to the hardest thing my husband and I have been through together. I do not want to scare any of you parents who are going through the same sort of thing we are, but I will put it this way... if our daughter was not showing obvious signs that ther condition was worsening, then we wouldn't have put her through it. It started off with one of the techs giving us the wrong information, this was an accident and everyone is entitled to making mistakes, but just listen to how this unrolled...

On the phone i was told that my daughter would be given gas for sedation and that was it, no i.v's... they would monitor her breathing and heart, and that this was all safe. I was also told that we would be able to watch from a room with a window, and would actually be able to see her through the whole process. My Dr did not order a test with contrast (another concern of ours). then when we got there... we were told she would have 2 i.v's, one of them would be for emergency & anestisa, if something went wrong and the other one is the one that they will inject the contrast in. Then we were told that she was going to be intibated (complete tube down into her lungs and she would have a machine breathing for her) the reason for that is because there are points during the mra when they need to stop her breathing to get the best shots near her lungs and heart..etc. then last we were told we would have to wait in the waiting room during the whole process, except the gas part, we would be with her for the first about 2 minutes of the process, and once she was out we had to leave, and they came to get us when they were on the way to recovery about an hr and 45 minutes later. She was extremely tired and cranky when she woke (which i knew was normal).

Now, you have to trust me that I am not trying to scare anybody.. i just want to make it very clear that you make sure that if your going to be doing anything that you make absolutley sure that the person giving you the informatioin, has the right to do so. I was so on top of my game with this, (so i thought) i had a timeline, i had Dr's and techs and phone numbers and this and that.. I thought i had it all down, and was very suprised that i didn't.

One important thing that i learned from the Anestiologist is that not even the Dr makes certain decisions... like wether or not to use contrast. He told me that it is up to the radiologist and what they feel they need to do to get accurate tests.

What i have expressed in this blog may seem like I am angry, but I am not. I know that this absolutley had to be done.. and the way it worked out made it so that We didn't stress out even more for weeks, knowing everything that was going to happen. Ignorence is bliss.

I am expecting a call from the Dr today with the results, it has been over 48 hrs, which of course worries me... but I know all will be ok.

They did a scanogram (x-ray with ruler) to measure her bones, she is at a 2.4 cm difference now.

A few weeks ago we decided to use an internal shoe lift, this goes inside the shoe & we notice a huge difference in her physical performance. She walks better and for longer periods. She used to get tired quickly when walking long distances, but now she does much better. Although we did have to go shoe shopping for a few new pairs that the lift would fit comfortably in. (uggs work great and winter is coming )

It is 4:10 pm so I am expecting a call anytime now with her results...
Reply With Quote
  #10  
Old 08-26-2010, 11:45 PM
bcoates02 bcoates02 is offline
Junior Member
 
Join Date: Jun 2010
Posts: 4
Default

We got the results. They have ruled out KTS and CMTC and all eles at this time. They are calling it "isolated asymmetry" and we are going to see an orthopedist surgeon to discuss our options on dealing with the descrepencies. Their reason is there were "no vascular findings associated with KTS"... and that they found from the MRA. She is completely healthy and no other organs or limbs are affected...
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump