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-   -   Anyone have a child with a deep H? (http://birthmark.org/board/showthread.php?t=3455)

crofte 06-07-2009 05:27 PM

Anyone have a child with a deep H?
 
Hi,
My daughter has a deep hemangioma, and it seems like most of the information that I find deals primarily with superficial H's--can any body share their personal experience about whether it involuted or what type of treatment was used?

My husband and I are feeling very frustrated at this point. Surgery was scheduled, then cancelled because of bleeding risk. We prepared ourselves for all the things that may happen during surgery, but we also started to look forward to her no longer having a bump on her head. I was glad that she would not have to be in any pain from the surgery, but really disappointed that she would continue to have the H on her face---this kind of made me feel "shallow"--the feelings are all complex! Everywhere we go, people say, "Oh no...how did she bump her head?" or "did she fall?" I try not to resent this, but really, I don't like that people may assume that I drop my daughter, who is not even mobile yet (4 months)!!

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madison'smom 06-08-2009 01:09 AM

Hi I am from Fort Collins CO and we took my daughter who is now 2 to Dr. Morelli in Denver when she was a baby and he said that they don't do any treatment until age 4. Hers is compound but mostly superficial and quite large. We found Dr. Waner when she was 1 yr old and started treatment for her. Everyone around here are really conservative from my experience. I would suggest maybe getting in contact with Dr. Waner and seeing what he says.
Stacey

megs1082 06-08-2009 11:24 PM

My daughter has 4 hemangiomas - 2 deep (1 parotid - on cheek near ear, and one on her fingertip), 1 compound on her shoulder and 1 superficial on her chest. We sought treatment because of the parotid hemangioma which was growing rapidly and was 6 cm across at 7 weeks of age.

Your daughter is beautiful! Also, your feelings are very normal! I don't mean to make you feel worse, but your daughter's h looks to be getting dangerously close to her eye. You didn't mention where you are from, but I'm wondering if you have sought the opinion of a specialist, or who it was that was going to do the surgery? I would contact the experts on this site and seek their opinion - send them pictures. Depending on the experts opinion, I would also seek out someone local who is willing to prescribe Propranolol for your daughter. Have you done any research on this drug? Do a search on this site for "propranolol" and you can read a number of parent's stories. My daughter is currently on it for her parotid and and it worked wonders. Dr. Waner recommended it for my daughter. In just a few weeks it went from a lesion that was disfiguring her face to not even noticable if you don't know she has it. Propranolol is not without risks, and you should do your research, but with proper monitoring, it can be a wonderful treatment. I think, that with possible eye involvement, it may be a very good option, and I think it may be the option the experts point you towards.

If you have any questions, please feel free to e-mail me directly.

megs1082@hotmail.com

My daughter is also 4 months old by the way!

crofte 06-09-2009 12:23 AM

Thanks for the reply!
 
Hi Megs,

Thanks for the reply--I'm glad to know that what I am feeling is normal!!

I am also worried about how close the H is to her eye. I have asked the experts, Dr. Fay and Waner, and am awaiting their replies.

We have sought treatment through the Children's Hospital in Denver. In fact, we had scheduled surgery, but the plastic surgeon who was going to help decided that it was too risky. He said that Hemangiomas are rarely operated on, and that it was not big enough for any type of treatment at this point. He said that it shouldn't grow rapidly anymore and should totally stop growing around 9 months, then start to involute slowly. He reccommended that we go to the vascular malformation clinic at the hospital if we were worried, but that they would most likely not do anything at this time, and if they did she would be put on steriods...I'm not sure how I feel about that--guess I need to do more research. So right now we are just seeing her GP in Western Nebraska and monitoring the growth..

megs1082 06-09-2009 06:52 PM

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

bsmom 06-10-2009 03:14 AM

Hi! My son developed a deep hemangioma around 2 months old, similar to your daughters, his is right on/above his eyebrow. We took him to the pediatrician who they thought it was a dermoid cyst, so they referred us to a plastic surgeon who then told us it was most likely a hemangioma. We underwent the MRI as well to make sure that is what is was...
We went to see Dr. Waner and were torn with what to do! Dr. Waner and Dr. Levitin were both so wonderful. We in a way wanted to do the surgery, but ended up taking the wait and see approach saying we would reassess at 1 year old, It grew steadily from 2 months to 7 months or so, then stayed about the same until he was 10 months when we started to see the size and color diminish a bit. We still get the questions of course as it is still noticeable, but it doesn't look as "bruised" as it once had and the size has definitely decreased.
We do go to an opthamologist on a regular basis to make sure that it is not affecting his vision, which was our primary concern, with it being in that general location. We also go to a dermatologist who has also been wonderful. He had told us he would "wait and see" , but that if it was affecting his vision, that propanolol- a newer treatment would be the best option. I remember feeling so torn as whether to treat or wait and see.... this site was so helpful to me and just learning through this site and through research helped me to feel more empowered to make the best decision I could~ Good luck to you. Your little one is adorable!

crofte 06-10-2009 03:31 AM

Hi
 
Hi Bsmom--

Wow! Our stories are so similar! My daughter's H was also diagnosed as a dermoid cyst by our Derm...it seems like it has been a long journey just to get the correct diagnosis!

I appreciate hearing your story--my husband and I are torn right now, debating whether or not we should ask our doctor to look in to propanolol or to just wait and let it shrink on it's own. We are waiting to hear back from Dr. Fay, the vision expert, and Dr. Waner, to see what they think.

I have read about the new drug, and it does seem like a miracle worker, but, at the same time, I hate the idea of having to put her on something that might make her feel bad...especially at an age where she can't tell us what is going on! My husband thinks we should wait, since it isn't affecting her health, but as you can see, it is already affecting her cosmetically. Obviously, I love my daughter no matter what she looks like, but I hate the idea of her looking "different" and not understanding why as she ages...it is such a hard thing to deal with. And, more importantly, I am worried that it may affect her vision if it grows larger...so?? I guess we'll just have to wait to hear back from Dr. Waner...

Thanks so much for telling me about your son!

bsmom 06-11-2009 01:31 AM

Hi there! I am glad sharing my story helped you... I remember feeling the same exact way you are feeling now. My husband also wanted to wait from the beginning, but I was worried about the same things as you---if it gets bigger will it affect his vision... cosmetically too-I know the feeling! I was worried about him realizing he looks "different".

Our decision to wait and see was difficult for me and I questioned myself everyday. I didn't want him to ever remember having it- that is why I initially leaned towards surgery. At that time, nobody had mentioned propanolol either....I felt more in control when I set up opthamology appts every few months to have his vision monitored and had dermatology appts lined up to have him monitored as well. If it started to affect his vision at all, we were going to treat it, otherwise we decided to wait and see. Continuing to monitor it and have a team of doctors that you trust and have experience with it is key I believe. We also decided that if by the time he is ready for pre-school it is still not gone, we will do something...

Whatever you do, at least you know about the options and you already are accessing wonderful resources through this site... By the way, Dr. Levitin was very helpful to us as well if you would like to email him too- he's on the expert list...
Take care :)

crofte 06-11-2009 04:23 PM

Thanks for all your information Megan!
We heard from Dr. Fay today, and he thinks surgery is necessary. He also said propanolol isn't as effective if it isn't used right when the H is diagnosed...so?? Guess we have a lot of thinking to do. I'm going to email Dr. Waner's secretary right now!!
Thanks for the inspiration!!

megs1082 06-20-2009 07:12 PM

Any news Crofte?
 
I'm glad to hear you heard back from Dr. Fay. Any communication with Dr. Waner?


It's interesting that Dr. Fay said the propranolol doesn't work well unless started early. I know that in our derm clinic, they have tried it on a few other children and their h's haven't responded as well as my daughter's. But, then I've read of other cases where older children have done well on it. I think the bottom line is all h's are different and respond differently to treatment. I guess I'm wondering if there isn't any immediate danger to your daughter's eyesight, if there would be anything wrong with trying the propranolol (if that is something you would want to do) just to try and avoid surgery if possible. In my understanding, if the propranolol is going to help, it does so quickly. You should be able to tell for sure if it would help within two weeks or so. We saw changes to my daughters within two hours of starting. Just a thought. Hopefully you have heard back from Dr. Waner and already have a greater idea of what, if anything, you are going to do!


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