New Mom - Questions for others on growth rate/treatment

iriecricket · #1 02-13-2009, 01:07 AM

Hello all. First, I wanted to say thanks to everyone for their contributions to this site -- it's a wonderful resource!

My daughter is 3 months old with a hemangioma on her forehead that appeared when she was about 4 weeks old. Recently, the hemangioma has started to grow rapidly (although it still pales in comparison to many posted on this site). Because of the recent growth, I've become a little concerned with our pediatrician-recommended "wait and see" approach.

I've made an appointment with our pediatrician for tomorrow. While I was away from home today, the doctor called and went over the whole "wait and see" approach on our voicemail (although she didn't flat out say to cancel the appointment for tomorrow, it was suggested). I was planning on discussing with her the use of Propanolol by suggesting that she read about some of the research being done and the positive results obtained from the use of the drug. Our ped. is young and Georgetown-educated so I was guessing she'd be interested in reading up on alternative treatments.

Maybe I'm jumping the gun. I was hoping to see some photos of the progression of some of the hemangiomas discussed in this forum. While my daughter's seems smallish today, given the recent growth, I imagine it will get substantially larger and I don't want to wait until she's one+ year old and look back and think we should have done something sooner.

I've attached photos showing the growth and would love input. I apoligize for the photo quality and the fact I had to cut and paste due to file size. In the 3 month photo you can see an outline of where the hemangioma will likely continue to grow by the lighter pink areas under the skin.

We live in southern California and it looks like there are a number of experts in the area. If you think I should pursue an appointment with one of the specialists, please let me know. If you believe I shouldn't yet be concerned, I'd certainly appreciate that input as well.

As a side note, our daughter was also diagnosed with a heart murmur (verified through an electrocardiogram); however, during her 2-month checkup the ped. indicated that it sounded like she'd already outgrown the murmur. Our daughter was 8 lbs, 4 oz. at birth -- not premature although I did have placental problems early on in pregnancy. I've read a little about PHACE but don't think we should be overly concerned with that issue. Any thoughts?

Thanks to everyone in advance, for your assistance and input!

Lynn

madison'smom · #2 02-13-2009, 02:50 AM

In my personal opinion the location and the size don't look real concerning to me. My daughter's H seemed like it did most of its growing by around that age. My daughter's is a lot more severe than your daughter's and she didn't get treatment until the age of 1. Her H is also segmental and not focal which usually have worse cosmetic outcomes. It wouldn't be a bad idea to get it checked out by a specialist to get their opinion. Here are pictures of my daughter at 3 months then 1 yr. without treatment as well as today with 5 lasers and 1 excision.

lpm · #3 02-13-2009, 11:16 AM

Personally, I would not be too worried at this point. My niece had a hemangioma that was almost the same (both location and growth rate). I have seen a number of cases of forehead hemangiomas that involuted well by age 3 or 4. My niece's did not involute by that age, so she had laser - a few quick "zaps" and the color was gone. Now, several years later, I can see the hemangioma when I look at her forehead - because I know it is there - but no one else would ever notice.

Sometimes the specialists have a long wait for an appointment. Perhaps you could make an appointment for 2 or 3 months from now, then cancel if it hasn't grown much.

As for PHACES, that is typically with large segmental hemangiomas, and your child's appears to be a "focal" type hemangioma. My youngest had/has two compound hemangiomas, and she had a murmur as well. The pediatrician thought she had a hole in the heart, as the murmur was "loud" at a few months old. Nothing of PHACES was mentioned (pediatrician likely didn't know about it anyway), but she did have an EKG and an ultrasound of the heart. She is fine in that regard.

My personal experience with pediatricians though - for hemangiomas or anything else - if you are really worried, and think they might be wrong, go straight to the specialist. My other kids have had (common) conditions that the pediatrician refused to diagnose, and they would have been better off if I just went with my instincts.

Tessamarie · #4 02-13-2009, 06:45 PM

My daughter's H looked very similar to yours (my daughter's has grown a fair bit since the two month mark). Hers got larger under the skin and ended up bulging out by the time she was 6 months old. My doc said "wait and see" but changed her mind at our last appointment when my daughter was 7 months old. We are using a topical steroid cream now (Temovate) and we are seeing some very slight results. I am not sure if this is the way to go either. I just wanted to let you know I have been contemplating other options too...I just don't know what is the right thing to do or if we missed our window of opportunity to do anything more.

Katie&Lexi · #5 02-16-2009, 02:15 AM

Hi
If your in the So Cal area try Dr. Metz at UC Irvine. My daughter and I just saw her last week and she is wonderful!
Katie

iriecricket · #6 02-16-2009, 10:12 PM

Thank you to everyone for the replies and advice. I saw the pediatrician on Friday and she is still recommending the wait-and-see approach. In the mean time, I also have an appointment scheduled with Dr. K. Kelly at UC Irvine at the end of March -- it's a long wait to get in but I'll take what I can get.

I'd still love to see more photos of the growth phase of hemangiomas. From what I've read online, my daughter's hemangioma my have reached its peak growing phase. Hopefully, we'll start to see a slow down soon.

Best,
Lynn

macyharper · #7 02-24-2009, 05:22 PM

I would suggest going to a specialist, just to be on the safe side. My daughter had H's on her scalp and the back of her neck. Against the advice of our pediatrician, we took her to the specialist in our area when she was 2 months old. He also recommended the wait and see approach, but ended up removing them at 6 months of age due to ulceration. I was so glad that we already had that medical contact in place when we were faced with the painful ulceration. GL!

kaylan_edgcumbe · #8 02-25-2009, 04:00 AM

Hi Lynne,

Your daughters H looks similar to one of the ones on my son's shin. This particular one was starting to become visible at around 3 weeks, and progressed a bit until it was about the same size as your daughters now, none of his hemangiomas grew past 3 - 4 months, and at around 6 months a few of them started to go white/grey in the middle - the puffy one on his shin has since started to go white in the middle and the puffiness has gone down dramatically, it's starting to look like a balloon that's slowly deflating. He's 9 months old right now. He has 8 in total, of the 8 one is about 60% gone, 5 are in the process of "deflating" and turing grey in the middle, and 2 have yet to have any noticable change.

Hopefully you'll start to see signs of involution around 6 months.

iriecricket · #9 02-25-2009, 09:04 PM

Thanks again to everyone for their responses. I am so happy I found this site.

The more I thought about waiting to see what was going to happen to the hemangioma, the more it started to bother me and make me anxious. I've always been a pretty proactive person but I have never sought a second opinion on any medical issue in my life before now. I took her to see Dr. Nelson at UCI this morning and he gave her a prescription for Betamethasone and started her on DC laser treatments. The laser treatment lasted just seconds. I could hear her crying in the next room but it was because they had to cover her eyes and not because the laser was hurting her. She stopped crying within seconds and was just fine by the time the (very kind and sweet) nurse brought her back to me.

I will take her back to Dr. Nelson in one month and he estimates it may take 5 or 6 treatments before the hemangioma is gone. I feel a total sense of relief that we've started the treatment process. I believe that if the hemangioma wasn't so prominent on her face, that my husband and I would have decided to wait it out. Thankfully, we have pretty good insurance so we didn't have to wait for approval before treatment began. I will try and take lots of pictures of her progress, just in case anyone has any questions.

On a really interesting note, I was talking to the nurse before Dr. Nelson came into the room and gave her a little bit of the history with our pediatrician and the "wait and see" stuff. The nurse said that she can't count the number of times she's heard that and that it's extremely frustrating that pediatricians are refusing to embrace the new treatments available. The nurse indicated that Dr. Nelson lectures a lot about the new treatments and yet, very few doctors are changing their stance. While I doubt our daughter's hemangioma would have caused any health issues, I know there are plenty of children out there who are in a different situation. Can anyone shed any light on why there's so much push-back from the medical community about hemangioma treatment? Is it an insurance issue? It's really sad (and quite maddening as well). My research indicates that up to 10% of the children in the U.S. are born with the condition yet I'd never heard about a hemangioma until our daughter had one. Of course, once people begin to hear about our story, they weigh-in about a son, or a niece or nephew, etc. that also had a hemangioma. I hope and pray that there's a sea change in the pediatric community soon.

Best,
Lynn

Katie&Lexi · #10 02-27-2009, 10:10 PM

Hi Lynn,

My husband and I feel the same way about our daughters hemangioma, if it wasn't on her face we'd be more likely to wait it out but its right below her nose so it's in an important place. Anyway my daughter is seeing Dr. Metz at UCI and she's started her on orapred 3 ml a day. It's been two weeks and we just went in for a check up and the hemangioma has stopped growing. Yay! At our first appointment Dr. Metz talked about laser treatment when my little one is 3-6 months old. Anyways I was just wondering how your little girls laser treatment is going.

And I agree with you about the frustration with pediatricians wait and see method. I was told to wait and see by 2 doctors but I went ahead and meet with several specialist and have been really happy with Dr. Metz and everyone with UCI.

Thank you,
Katie