Hello! I normally am posting on the Hemangioma board since my daughter had one removed last year.
When she was 2 months old I noticed some pink spots turning up on her lower left leg. More of them started showing up in a spotty pattern. I showed Dr. Waner in NYC and he said it was CMTC. However, when I took her to a pediatric dermatologist he said it was just a Vascular Malformation. Same? Different?
She is now a year old and the markings are definitely darker now. Is that common? Did they just take longer to show up? They don't fade when she is warm either. It now goes from her knee all the way down to her foot in a mottled pattern. Almost the color of salmon patches.
I am really confused as to WHAT is on her leg. We go back to Dr. Waner next week so I plan on showing his team her leg since it looks way different than the last time we showed him.
I know nothing can be done about it and she has no other symptoms (besides her Hemangioma which I am unsure if that is related) but I just want a firm diagnosis as she grows up.
I know that from what I have learned and experienced with CMTC (23 months) that it is usually clearly present at birth and may or may not lighten. In Becca's case her leg is sometimes lighter but there is always some molting clearly present. Also I wouldn't say hers has improved from birth. Also, I do know that many doctors will refer to CMTC as a vascular malformation. From what I have read about Dr. Waner he is very knowledgeable and would a great reference even though CMTC isn't his specialty. From our experience it isn't so much about CMTC but managing the associated problems that may or may not be related. The doctors will tell you that they can't really tell you that the related problems are from CMTC because it is so rare. We are facing serious heart issues with our baby but have found nobody else that has had this experience yet our doctors do believe it is probably be related. I will tell you that we have been through a lot and I am more than willing to be a reference point if you need advice. I will try to check back soon. We leave for Mayo Clinic on Monday to see Becca's cardiologist for her recheck. She is have some significant complications so it will be a stressful visit so we would appreciate all our friends on thus board to keep her in their thoughts next week. Then in another three weeks I will be leaving for brain surgery so I might not be around a lot in July.
We saw Dr. Waner this week. He is waivering now about the CMTC. She definitely has a vascular malformation in her leg. He mentioned KTS but I doubt she has that either since she had NOTHING on her leg at birth. We go back in August for a follow up.
Hi - I am not sure if you are still checking this thread but my son's markings sound a lot like your daughter's and I wanted to follow up to find out how she is doing now? My son is 14 months old now. If you are still active, I would love to hear from you. Thank you! Jen
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