Make your own free website on Tripod.com

 

*********Disclaimer********
This site is from a parents perspective.  All information
has been found through personal research or personal
experiences and is not intended for medical purposes.
  As always, one should seek the advice of a doctor or in this case,
a vascular anomalies specialist.
**************************

 




Leave It Alone   :  In some cases the hemangioma may be small enough that it  will not warrant any treatment.  If its cosmetically disfiguring, but otherwise not a risk to the child, then  the parent faces a tough decision whether to treat or not.  In this case, I would  get a second opinion if I am told to "leave it alone and it will go away" because in the past children with hemangiomas have fallen into a category  of 'benign neglect".  Tremendous strides have been made in treating and managing hemangiomas.  If any parent asked me about leaving it alone, I'd feel obligated to tell them I was told that very same thing and to read my daughters history.  It may not turn out like Danielles, but an informed parent is a powerful one that can make a knowledgeable  decision......  Research, research, research!   And get a second opinion from a doctor experienced in treating hemangiomas.

 

Laser  :   Several different lasers can be used in treating hemangiomas, here are a few of the names:  Flashed lamp-pumped dye laser,Pulsed dye laser, pulsed Neodymium (Nd):   YAG, frequency-doubled Nd: YAG, KTP lasers.   Danielle had laser surgery on three seperate occassions, and may still need more but were waiting until she's 5 to see how much will fade since the last laser treatment.  I've been told personally that the level of pain involved with a laser is likened to that of a rubber band snap.   Danielle was under anesthesia each time thankfully, and given Tylenol with Codiene afterwards.  I also used Mederma ointment on the areas as well.  Each laser has specific benefits and limitations regarding  how deep the hemangioma is. Very deep and compound hemangiomas are a better candidate for steroids.   Laser can also be used to treat ulcerated hemangiomas, as my daughters was.  In our case, it closed up the open wound (ulceration), but I was forewarned by one of our drs. that in some cases it can have the opposite effect.  Thankfully it worked for us.

 

Steroids (Oral and Injections)  Corticosteroids seems to be the most common treatment for hemangiomas, and my experience was in the oral doses of prednisolone (aka prelone), which was a liquid giving by mouth.  Danielle started steroids as an infant, and their given during the growth (proliferating) stage.  It stopped the growth, sometimes shrinking it moreso, other times just stopping further growth.  We played the "cat and mouse" game off and on, for her first year till eventually we weaned her off and the hemangiomas stopped growing.  I don't even want to mention correct dosage because it varies depending on the childs weight.  I did find that all doses are started off high, and then tapered down slowly.  I was decreasing the doses very gradually every 3 - 5 days.  Danielle would wean off of them, and within 2 wks the hemangiomas would start growing, but then the day finally came around 11 mo's when they didn't rebound.

 

Surgical Excision :   Surgically removing a hemangioma when it's thru the growth stage and involuting (shrinking) seems to be easier than when it's proliferating (growing), since the risk of hemorrhage is greater.  Therefore, I will stress again how important it is to find a vascular anomalies specialist to perform any surgery on hemangiomas.  Our VAS used a special hot knife that caurterized while it cut, reducing bleeding.  He had a specialized technique and tons of experience in hemangioma removal.  If surgical excision is necessary during the proliferating stage, I was told embolization can be used to reduce the size and loss of blood during the procedure. 

 

 

LIFE THREATING STEROID RESISTENT TREATMENTS:

Interferon (2 alpha) :  From our experiences, I was told not to consent to treatment of interferon unless Danielle's hemangiomas  became steroid resistant  AND  life threatening.   Please read her history for all the side effects, but the one that scared us the most was possible spastic diplegia which would be permanent if it occured.     We were fortunate we never had to put her on this, but this is an area that more research seems to be surfacing everyday.  One advantage I found was that interferon does not have to be administered during the growth phase to be effective.   It usually responds slower than steroids requiring several weeks.

I also read about some trials which used tranexemic acid, epsilon aminocaproic acid or Vincristine.  I do not know much about them but what the trials studies showed, which was they did have positive results when corticosteroids failed in life threatening steroid resistent cases.


PLEASE with any treatment ask question after question after question, get second opinions if you have too, until you as a parent feel comfortable in your knowledge for whats best for your child.  Gods speed to you!