Vascular Birthmarks Foundation Forum - View Single Post - Anyone have a child with a deep H?
View Single Post
  #5  
Old 06-09-2009, 06:52 PM
megs1082 megs1082 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 19
Default

Crofte,

Yes, research is key! You have to do your own, or you will be left second guessing yourself (you'll still probably second guess your decisions, but at least you'll know you did your best to get find all the information to help your daughter!). Deciding how and when to treat my daughter's H was the hardest thing my husband and I have ever done. I don't know if you are a person of faith or not, but prayer definitely helped us. You also have to do what YOU know is right. Don't let anyone, not even a Dr. tell you not to treat if YOU know something needs to be done. God gave us Mommy and Daddy instincts for a reason. No one cares more about your child than you do and we as parents sometimes need to fight for the care our children deserve. It isn't purely a vain decision to treat - their is more at stake than simply appearance; especially in cases such as your daughter's where eyesight is potentially involved. I know people will sometimes make you feel like you just can't handle having something different about your child, but don't let people make you feel guilty. I know you don't want her to look "normal" just for you - I know what it's like to worry about how your daughter will think about the way she looks! Most Dr.'s are very uneducated when it comes to H's - that is why they tell you just to monitor. Most H's can just be monitored, but when it comes to H's on the face that are growing very large or may potentially hinder something like sight, then maybe something should be done. You will make the right decision for YOUR daughter - if you decide to treat it will be right, and if you decide to just monitor, it will be the correct decision as well because you wouldn't be on this site if you were a parent who didn't care enough to make the best decision possible!

Hopefully your daughter's h has stopped growing. Do you feel it has stopped? Unfortunately, Dr.'s can only make predictions - H's vary greatly and no one really knows how they will behave. I cannot tell you how many predictions were made about my daughter's that did not come true! Your daughter's may stop growing at 9 months or it may keep growing until she is 18 months. Your Dr. was correct not to operate at this time. Dr. Waner won't operate, unless there is a major health risk not to, until he is sure the H has stopped growing.

I know they told you that if you did treat it would be with steroids, but I would reiterate that it isn't the only treatment option available now. We are so fortunate - a year ago, steroids would have been the only option, but now there is propranolol! My daughter did actually start on the steroids at 3 weeks of age because her ped. derm. was reluctant to use propranolol. Her h kept growing rapidly even with the steroids and that is why we started using propranolol. Our ped. derm. went to a conference over that time period and came back much more open to using the drug. We are located in Kansas City and started the drug as an inpatient at the local children's hospital. She had an ekg and echo performed beforehand and was monitored in the hospital while on the drug, for the first 48 hours. This is all a precaution since it is a drug that can potentially lower the bloodpressure. My daughter hasn't had any problems. Many Dr.'s consider it to be a much better option as far as side effects are concerned, as opposed to steroids. I know John's Hopkins is using it as first line treatment, and Dr. Waner told me that because of my daughter's very young age at the time of treatment, we shouldn't continue taking the steroids (she would have to be on them for far too long), and that Propranolol was the much better option.

I'm glad you sought the opinion of the experts! Dr. Waner was wonderful - I know he will get back to you! I did also e-mail his assistant, and she was instrumental in making sure he got back to me right away. She actually, e-mailed me back within seconds and asked for my number so Dr. Waner could CALL me. He did so that same afternoon! Her name is Corey and here is her e-mail in case you'd like to e-mail her as well CTournay@chpnet.org Dr. Waner was so nice on the phone and told me to call back any time I had questions.

I know you'll be getting the best advice from the experts, but you may still need someone to help follow through with treatment if you choose to treat. Dr. Waner may be able to give you advise as to someone in your area who can do so competently, but if not, you may look into the names below. I got them off the "find a physician" page on this site. I know Kansas City is a bit of a drive for you, but if all else fails, I'd be happy to give you the name and number of our ped. derm. here.


Colorado
Dr. Joseph Morelli
University of Colorado
Health Science Center.
Dept. of Derm.
B153 4200 E Ninth Ave
Denver, CO 80262
303-372-1111


Dr. Stephen Eubanks
The Laser Center
950 East Harvard Avenue
Denver, CO 80210
303-744-2704


Dr. Wayne Yakes, Director
Dr. Nick Yee
Vascular Malformation Center
Interventional Radiologist
Swedish Medical Center
Englewood, CO 80110
303-788-4280

I'm sorry this is so long! I just know how worried I was trying to find out information - ANY piece of personal experience was SO helpful to me!

I'll pray you find peace in making a decision that if right for your daughter!

Megan
Reply With Quote