Steroid treatment for hemangioma

Hi there,

I have twin girls who were born at 31 weeks, they are now 11 weeks old, 2 weeks adjusted - spent 6 weeks in NICU, home for 5 weeks now. One of my daughters has a hemangioma on the tip of her nose and has been seeing a pediatric dermatologist since being in the NICU. At the most recent visit to the dermatologist he recommended putting her on oral steroids to treat the hemangioma because it is spreading rapidly now. The dermatologist says injections are not a good option because of the location of the hemangioma. My question is - has anyone dealt with this and how taxing is the treatment on the babies' system? She would have to take oral steroids daily, as well as antibiotics and zantac to help with stomach upset. He said the treatment would last 3-6 months and this is just to stop the hemangioma's growth. Then he would have to lazer it off.

I am concerned about side effects of the steriod treatment - sounds like her rate of growth would be affected and her immune system compromised. She would have to have her blood pressure monitored regularly. We are already on lockdown for RSV season, so this now seems like we will have to continue staying indoors and limiting visitors long past that. The doctor strongly warned against germs and too many visitors and contact with other children.

Does anyone have and experience to share regarding hemangioma treatment? I will do whatever I can to get my daughter the help she needs, but she has come so far already from her time in the NICU, I would hate to see the steriod treatment cause her to struggle even more. We are going to decide this week how to proceed with her treatment.

Thanks, and I am so glad I found this resource! I've already found a lot of strength reading the discussions here posted by other preemie parents.

-Evelyn

By Mgnsmom
Posted February 22, 2009 at 5:33 pm
Report post

Evelyn,

My daughter, Megan, has a hemangioma on the bridge of her nose right by her left eye. I know exactly what you are going through!

Her hemangioma didn't show up until 2 days before her discharge from the NICU (10 weeks actual age). At first they were just waiting and watching its growth. It grew rapidly for 4 weeks before we saw the pediatric dermatologist in Pittsburgh, PA.

She was immediately put on oral steroids, zantac and bactrum (antibiotic). She was on these medications for 8 months. She definitely got the "steroid cheeks" or cushings. They told me that it would increase her appetite, but we actually experienced a decrease in appetite. She has had slow growth and low muscle tone, but I don't know if that was due to the steroids. It was at the same time we were on lockdown for RSV season, so we kept her home anyway. They did also tell us to be aware that it suppresses her immune system. She did also get pretty high blood pressure while on the steroids.

We did see a tremendous reduction of the hemangioma. It didn't just stop growing, it shrunk and lost its color. That being said, when she went off the steroids, it did re-grow. It didn't get to it's original size, but it was definitely growing.

During that time we had moved from PA to Wisconsin. We took her to the hemangioma clinic in Milwaukee to see Dr. Drolet. She started Megan on the new treatment of Propranolol or infant high blood pressure medication. She was on that for about 7 months and just stopped almost 2 weeks ago. So far we have not seen any regrowth, but we are still watching for it. The Propranolol had significantly less side effects. You just need to watch the blood pressure levels that it doesn't get to low. It can also lower their general body temperature. It is a new treatment, so Megan was the first time they used this medication at that clinic. She is also the first one to go off the medicine, so we don't know what to expect.

Anyway, that has been our story so far. Megan is now 19 months actual and I don't see any negative side effects from the steroids so far. She is just under 20 lbs, 30 1/4 inches tall, walking and just tested out of EI. Her Cushings went down completely. I will message you as well with my email address if you have any other questions and I can send you some pictures as well. There is definitely not near enough information out there on hemangiomas!!

Susie

By elang
Posted February 23, 2009 at 2:47 pm
Report post

Thanks, Susie! I will send you an email so we can chat. I really appreciate it!

CallysMommy - Thanks also - that is my favorite photo of my girls so far!

By BarbaraK2U
Posted February 23, 2009 at 11:01 pm
Report post

For what it's worth, my daughter has a hemangioma on her chest, high up by her neck. I took her when she was 2 to a world-renowned plastic surgeon in my area who was so full of himself that he discharged us without treating us when I dared to ask questions about alternatives to surgery. We made an appointment with another highly recommended surgeon in our area, and just a week shy of the appointment the office called to cancel because the surgeon decided he "didn't want to see pediatric patients anymore". Finally, we saw another plastic surgeon who told me what he would do if it were HIS child: nothing at all. I was so astounded that a plastic surgeon would recommend NOT doing surgery that I asked a zillion questions. The main reason he recommended doing nothing? Because many/most hemangiomas involute on their own. Because surgery will ALWAYS leave a scar (often a very noticeable scar), there's usually a much better outcome if the hemangioma is left alone. His own daughter has a hemangioma on her back, and at the age of 8 (at the time) he said it's almost unnoticeable. The location of my daughter's hemangioma also was problematic because the skin on the chest is very thin and the scar would have been rather nasty.

My daughter is getting ready to turn 6 soon and the plastic surgeon was right. Her hemangioma has lost 90+% of its color (it had been brick red) and has involuted so much that it's nearly flat. A few more years and I suspect it will be nothing but the original tiny dot it started as way back in the NICU.

Every child is different, every hemangioma is different, and every treatment plan has to be different, but I wanted to put our story out there because it's not often that a plastic surgeon will turn down a money-making opportunity and "tell it like it is". It makes me doubly angry with the "world-renowned" plastic surgeon who insisted that my daughter HAD to have surgery immediately. Buyers beware: get several opinions and go with your gut. :-)

Good luck!

By sshuckhart
Posted February 24, 2009 at 4:14 am
Report post

My Natalie has 3 hemangiomas. One on the top of her head, a very small one that has not grown on her back, and one on her nose/nostril. That is the one that there was concern about as if it had continued to grow it would have blocked her nostril. It was watched and never grew enough to cause problems. Both the one on her nose and the one on her head have shrunk considerably without treatment, but it doesn't sound like that is an option for you. I don't really have any advice, just wanted to share my story and show my support.

By elang
Posted February 24, 2009 at 11:07 am
Report post

Thanks for sharing some more stories, it really helps!

We are told that we should pursue treatment because my daughter's hemangioma is in a location that could affect the delicate developing cartilage of her nose and thus the shape of her nose. The doctor also favors not treating hemangiomas unless it's absolutely necessary -- unfortunately, in our case, he feels it's necessary.

Still haven't heard back from the dermatologist, we haven't started treatment yet.

By elang
Posted February 24, 2009 at 11:09 am
Report post

On another note, there are two hemangiomas on her nose - one is a bright red surface mark (the Strawberry hemangioma) and the other is a deeper blue-ish growth. I think the deeper growth is the one we are concerned about.

By blessedchild
Posted February 24, 2009 at 6:35 pm
Report post

Two of my kids have had them. I highly recommend Dr. David McDaniel in Virginia Beach Virginia. He is one of the pioneers of laser surgery, people travel from all over the country to see him. He treated both my daughters, one of the girls hemangioma was on her cheek. We had it treated originally to stop it from growing. With one treatment it stopped growing and began to shrink. By five years old it was completely gone.

By vivo
Posted June 15, 2009 at 6:41 pm
Report post

My baby is now 2 months old with a strawberry hemagioma on her face right next to the side of her mouth. It's growing to about 2cm now. Her pediatrician prescribed her a steroid called Prednisolone and nothing else. She looks very tired and loses her appetite by about 1/2 when she's on the drug. I am thinking of stopping it. Has anyone had experience with this drug? Or if you have suggestions, please let me know.

Thanks,
Vivian

Welcome to Inspire!

Explore topics in this discussion:

10 replies

Add to the discussion

Group leaders

You