holden’s hemangioma

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7 Responses

  1. Tara Hood says:

    I know exactly what you went through! My daughter had 5 visable and 2 under the skin! (thank goodness none were on her face) We noticed two lumps, one on top of her head and one behind her ear! So we went to a doctor right away and they told us it was a tumor but we can’t get you in for a brain MRI for six weeks! Talk about the longest six weeks EVER! Turns out they were harmless and they told us they would go away by the time she was one and if not we could get them removed! She still has one on her back that is barely noticeable but all the others have disappeared! That was 10 years ago so I’m sure meds have improved and I’m glad things are better for your precious little girl!

  2. Tara Pocock says:

    I found your post while searching for photos that look similar to the malformation on my son’s face. This looks exactly the same and he also has the blocked tear duct. He is 8 months old now and we have just started going through the “rule out” phase. He has had an CT scan and the pediatrician is recommending an MRI, and possible biopsy and blood work. I started looking at Hemangioma images and I agree that was a bad idea. Were there any good sites that you found that were reliable and might be helpful in saving me unnecessary worry. I would like to balance taking care of my child’s health without needing to do gratuitous testing, surgeries, sedation, medication, etc. ANy advice would be appreciated.

    • ohbothermeg says:

      Hi Tara. I feel you on this; it’s scary when something is going on with your kid and there’s almost too much information out there. Pointing out, of course, that I’m not a medical professional in any way, I can give you some insight on our situation.

      I think I explained in one of the posts that my then-pediatrician (I now have a new one) was not helpful to me and actually scared me more. He was, however, able to diagnose Holden’s malformation as a hemangioma right away, without a CT or MRI. I went right to a pediatric dermatology specialist. If you’re thinking it could be a hemangioma, it might make sense to start with a dermatologist to find out for sure. I’m in Pennsylvania so I went to Penn State Hershey.

      Johns Hopkins’ info on hemangiomas was pretty clear and non-frightening: http://www.hopkinsmedicine.org/otolaryngology/specialty_areas/pediatric_otolaryngology/conditions/hemangiomas_vascular_malformations.html. This article in particular about the newer treatment with propanolol was helpful to me: https://www.hopkinschildrens.org/a-standard-of-care-for-hemangiomas.aspx, especially when we went to the dermatologist and propanolol was the course of treatment she recommended, so I felt comfortable that she knew what she was doing. We didn’t have to do any CTs, MRIs or biopsies. We did have to undergo some testing of Holden’s heart before she could start on the propanolol because it’s actually a heart medication.

      Re: the blocked tear ducts. I was never told that the hemangioma and the blocked duct were connected in any way. From what I’ve learned, blocked tear ducts are relatively common in babies; Gatsby (my second child) actually seemed to have a blocked duct, but I think it’s already clearing up now at 9 weeks. We waited until Holden was 14 months old to see if it cleared on its own and when it didn’t, I was referred to an eye doctor who specialized in the surgery to repair overflow tearing. So that would be a conversation with your pediatrician to see if you need to wait it out a bit…

      I hope that’s helpful! If you want to send me an email to talk more, I’m at ohbotherblog at gmail. Happy to talk you through it and hopefully ease your mind.

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  1. August 3, 2013

    […] may recall from my first post on her hemangioma that hemangiomas like Holden’s usually appear a few weeks to months after a baby is born. […]

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