Vascular Birthmarks Foundation Forum - View Single Post - Meet Ashley - VBF's CMTC Parent Rep.
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Old 09-09-2009, 08:42 PM
sheuker sheuker is offline
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Join Date: Sep 2009
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My name is Stephanie and I have a 5 week old daughter Macy that was born with a prominent vascular birth mark under her nose to her mouth and under her mouth. The doctors have told me this was a hemangioma, it has not changed shape or grown within the past 5 weeks. She does have 2 hemangiomas close to her spine on her lower back. Macy was also born with the splotchy mottled pattern as well. The doctor also told me that he wasn't for sure but he thought it could be Harlequins and it would go away in a week or so. Well, the mottled pattern appears very prominently when we bathe macy and when she is upset. I have been researching like crazy on a daily basis and driving myself insane with emotion. We finally get to see the Pediatric Dermatologist next week which I feel was torture making us wait 6 weeks too long. I came across your son's pictures and I feel like Macy might also have CMTC because it looks identical to Macy. I feel like our primary pediatrician has neglected us and she was too busy to get Macy in for her 1 month appt. and we have to see the CNP. I am very frustrated because I feel like they should maintain consistence with her care due to there being an issue which is unknown at this time. Well my specialist appt. is next week and my pediatrician has done no tests except the typical blood work. I don't know for sure what is going on but I feel like I have to advocate for my daughter because the pediatricians do not seem to be trying to figure out what is going on. Is there anything that needs to be done test wise ASAP. I am concerned about vision, I don't want her to have deficits because we didn't get treatment in time. How is Gavin doing development wise? Do you recommend any specific physians. I am from Ohio. I am in the medical field and I am an Occupational Therapist. Thank you for your time.
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