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Hemangioma?

chey_lowchey_low
in Special Needs

My daughter is almost 3 months and she developed a hemangioma around a month old. We have been to a dermatologist and she is on her second round of medicines. The hemangioma is located on the top of her head  not far from her frontal soft spot. She has always been a great sleeper from day one and sleeps through the night with no problem and is normally up at least 2 or more hrs during the day and takes an hour to an hour and half naps throughout day, ranging somewhere to 14-16hrs sleep a day which is normal for infants. But the last 4-5 days she is sleeping all the time now. She wont stay awake for more than an hour at a time if that. You can look at her eyes and see she is super tired all the time. Shes sleeping 18-20hrs a day now. We went to have an ultrasound done today to see if they could possible tell if the hemangioma may be deeper than we think and pushing on her brain. The lady that did the ultrasound plainly told me that she wouldnt know what to look for if she tried. Needless to say a hour an half trip wasted. We are now looking at a cat scan to tell if its deeper but that means they must sedate her.

 How many of you ladies are dealing with hemangiomas and what are the doctors doing for your child? And if any of you have kids with hemangiomas on the top of the skull have dealt with this kind of situation I am describing?

TIA!

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Re: Hemangioma?

  • realisticdreamsrealisticdreams member

    P had what they referred to as a strawberry hemangioma on her head, it was about midline toward the left side.  No one ever said anything about it (and i'm sure their may be different types of hemangioma's) other than since it was so vessel-y if she were to get cut there or hit it, the bleeding could be a little extreme.  They also told us it would likely grow grow grow before starting to shrink.

    If you are worried about the sedation the FAQ should ease your mind, I honestly can't even keep track of how many times P has had general anesthesia now.  

    Good luck! 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • st.augbridest.augbride member
    Ds's hemangioma is on his arm, so we were basically just told to watch it and thata it should eventually fade over time, which it has just started to do. I do know that we were initially concerned about the possibility of other hemangiomas that could be internal, but to be honest ds had so much else going on his first year that without any other symptomns showing up, we never pursued it any further. Is it possible that for your dd it's something simpler, like a growth spurt? I know sometimes when we have SN kids, we tend to go to more extreme places first. I know I do. But maybe it's something more common?
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  • chey_lowchey_low

    imagest.augbride:
    Ds's hemangioma is on his arm, so we were basically just told to watch it and thata it should eventually fade over time, which it has just started to do. I do know that we were initially concerned about the possibility of other hemangiomas that could be internal, but to be honest ds had so much else going on his first year that without any other symptomns showing up, we never pursued it any further. Is it possible that for your dd it's something simpler, like a growth spurt? I know sometimes when we have SN kids, we tend to go to more extreme places first. I know I do. But maybe it's something more common?

     

    This is what I thought to but its lasted longer than any growth spurt I've ever seen! I talked to a dr today that had some experience toward hemangiomas and he mentioned maybe an internal hemagioma that we couldn't see was an issue. But without the cat scan we will never know. Its to the point that it is affecting her eating due to her sleeping so much. Maybe we can get her into an appt soon. Thanks ladies!

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