PWS on left foot/leg/buttock/lower back - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 08-27-2010, 11:26 AM
missy missy is offline
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Wonderful news!

When will you see the surgeon?

Missy
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  #12  
Old 09-02-2010, 03:00 PM
Talans Mommy Talans Mommy is offline
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Default Update on Talan

Wanted to update everyone on Talan. We took him in June to have his MRI with contrast done. The results came back fine. No KTS or any sign of any problems at all.

We were then referred to Cincinnati Childrens for a laser consultation. We had his appointment Friday. Okay, before I share this information, please keep in mind that every single case is different. Cincinnati Childrens is in the top 3 vascular hospitals in the country (see their website). They follow children from all over the country with vascular birthmarks.

Okay, we finally got some concrete answers. Talan's PWS are minor. The Specialist confirmed after reviewing Talan's Ultrasound and MRI that his PWS only affect the tiniest blood vessels just under his skin. They do not go any deeper and do not affect anything else. We were told that he has a "ZERO" percent chance of ever being diagnosed with KTS and a "ZERO" percent chance of ever having any health problems associated with his PWS.

As for laser, they predict that laser would fade Talan's PWS about 50% only and that maintenance treatments would have to be done probably once a year. They will not do any treatments until he is a year old since they would have to put him to sleep and do the procedure in the OR.

The Specialist predicts that due to the size (many very small patches) and depth of Talan's PWS that his will likely not be very noticable when he gets a little older even if we do no treatments. But, that the decision is ours.

So, we have about 4 months to think about it and decide for sure. If we choose not to have any laser treatments, Talan does not have to return to any Specialists for his PWS. They do not need to monitor him as he grows (although they do have to monitor many other children - so this is a case by case basis).

They also said it is very unlikey that Talan's PWS will ever thicken or develop bloody blebs.

The ONLY thing they said we should watch for is any growth issues. Children with PWS can have growth discrepancies even when KTS is not present. HOWEVER, they do not expect there to be any growth issues with Talan and they said any discrepancies would correct themselves over time.

I know that everyone gets different feedback. I trust that this is all correct because there isn't anywhere better to take him. This hospital specializes in vascular birthmarks so I truly believe they know what they are talking about.

I am very relieved that Talan is perfectly healthy and has no deep problems with his PWS. I feel like I can breathe normally for the first time in 8 months.

Talan just turned 8 months on Sunday. He started crawling at 6 1/2 months and now walks around furniture, stands and pushes toys while walking. He is so close to those very first steps unsupported. I can't wait. He's growing so fast.
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  #13  
Old 09-02-2010, 03:02 PM
Talans Mommy Talans Mommy is offline
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Default Brandi - Great News!

Great news Brandi. So glad to hear the results were negative!
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  #14  
Old 09-02-2010, 03:46 PM
abatie abatie is offline
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Congratulations on the great news! I am so glad that you like Cincinati Children's Hospital. One of Becca's doctors at Mayo is friends with a doctor there and so she gave us information from there on CMTC. We have had a similar experience that your doctors told you with limb discrepencies and correction. Becca's leg with CMTC will be shorter when she is going through growth spurts and then after awile when the rest of her stops growing her affected leg seems to "catch up". We have had this happen three different times already and she is 13 1/2 months old.
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