Monday, May 12, 2008

Ulcerated Hemangioma Pictures

I get A LOT of google search hits from my hemangioma posts. I thought it might be useful to put my timeline of pics all together. If you are squeamish, I recommend you skip this post.


I did a lot of internet searching out of desperation when WC's H started ulcerating, and I didn't easily find any pics like these, showing in order how an H opened up and then healed.

If you ever need any information about hemangiomas, or just someone to talk to who has been through one, just email me.


5 weeks



8 weeks

9 weeks

13 weeks




14 weeks


17 weeks


18 weeks


19 weeks


20 weeks


22 weeks


almost 7 months


10 1/2 months


1 year


15 months


18 months



2 years



I also want to send you to another post I wrote on this subject that mentions specific doctors and contact information.

Pin It!

84 comments:

Jules said...

WOW! Amazing!

Jennifer said...

I just can't imagine Sasha. My Princess Mimi has a small hemangioma on her head, and at age 2-1/2 it is staring to fade. I bet you and I could exchange tons of stories about the horrible comments help have said to me and my daughter, such as "WHAT HAPPENED TO HER!?" or "Did she fall down!?" (those were the nicer ones).

Mad About Plaid Girl said...

So what happens now? Does it eventually just go away? Does it hurt her? It is amazing--thanks so much for sharing......

Sasha said...

Jennifer, yes, a lot of people ask if she has been burned because that's what the scar kinda looks like.

Mad about plaid girl- normally a hemangioma can be left alone if it's not affecting vision, eating, or breathing and the color will continue to fade over time. However, if they break open like WC's did, it will leave some scar tissue that may need to be removed. In her case, it is very thick scar tissue and since it's in such a visible place, we'll be removing it.

Traci Anne said...

Poor little one looks like she's being eaten in the first few! It looks so much better!

Kerry said...

Poor baby - is it painful for her? I think it's great that you have documented this in pictures to show the improvement over the years.

Sasha said...

Re: pain

It is not painful at all now. When it was an open wound, it was very painful. Once it healed, she has had no pain at all.

I understand from another blogger (who knows from experience) that if we were to leave the scar tissue there, as she gets older and the skin stretches as she grows, it would get uncomfortable because the skin would be thin and "different" and might cause her some discomfort later in life.

Melissa said...

Amazing how much better it looks as time goes by!

Mandy said...

Poor baby. It looked like it was painful. I am glad that it's improving. Thanks for the info!

Buford Betty said...

Poor little thing! Great idea to document though - I'm sure that's really really helpful to you and others.

Naomi said...

Amazing how much it has faded! Shelby has 4, 3 on her head about the size of a penny and one on her back the size of a quarter. She's three and they are just now fading. Luckily the one's on her head are now covered with hair. I hated how people reacted to them. One person even asked my friend if he burned Shelby. I turned to see my friend going off on the lady and had no idea what was going on.

Sasha said...

Naomi, we have gotten "What happened, was she burned?" a lot- especially now that the red is fading and it's just scar tissue.

I am looking forward to our dr visit next month to schedule the surgery.

ASYA said...

hello sasha,
I found your blog while I was searching for H.at google..
My son also has one on this hand which is involuting..(8 months old)
Anyway..
I am happy that I found somebody sharing same problem with me..
Also..
I see that it has been 2 years that you are fighting with H and the results are amazing...
She is so lovely..

Anonymous said...

..hello! our little princess also has a 4cm hemangioma located at her left deltoid area.. i wonder if your child underwent any treatment and if YES, kindly enumerate them..so we could have a better option on which treatment modality we are to take after considering all option offered by her physician..hoping for your reply..

Gretchen said...

Our 6 mo. old daughter Lucy has 3 cm H in exactly the same spot on the same arm as your little Sasha did. The H began to ulcerate several weeks ago, and then Lucy banged it on her changing table.... Boy, did that H bleed. I mean, there was a POOL of blood. Ugh. I'll never forget that day! Now Lucy sees a plastic surgeon at Children’s Hospital here in Philadelphia. The doc recommends just waiting, but in the meantime, the H still seeps and bleeds, and we have to keep it bandaged 24/7. Lucy hates the bandaging routine (as do we), and whenever the bandage is off for a while when we are at the doc’s, Lucy tries to PULL THE H OFF!!!! UGH. We are hoping the H will start shrinking down now.... Some docs think it is shrinking already, but there's some disagreement on this. There was talk about possibly operating on the tissue 6 mos. from now if the H has shrunk considerably. I just can’t believe what a strange experience this is. I really want this thing GONE. Lucy is very active and could very well be an early crawler/walker. I worryshe’ll be banging the H around constantly--and having to deal with others’ responses to the resulting blood spill. I’m not happy with the waiting routine and wish there was some course of ACTION we could take. I’m so happy for Sasha that you are at the other end of this experience. Can’t wait for the day when Lucy can bid farewell to her "special mark" too!

amanda said...

My 3 year old daughter had an H on her top lip and it covered her nostrils when she was a baby. It's amazing how fast they pop up and how bad they get so fast. We took her to a dermatalogist and he had us put on aldara (a medicine for warts). It wasn't pleasant and you just want to cry watching your baby in pain! After it ulcerated and healed she had 2 laser treatments and now you can barely see the scar. Some of the worst moments I can remember are when people would say it looks like her nose is dripping and once when we were in a store. Their were two little girls and they stared and laughed at her. I'm so glad your little one is doing good now.

Blue said...

Thank you so very much for documenting this and putting it online--it's clearer info about hemangioma healing than I could find on many medical websites. My dd has a hemangioma on her thigh that is ulcerated and it seems to be taking ages to heal. It's so helpful to see what the process looks like.

Traci said...

I had one on running up the entire inside of my right arm as a baby. I'm now 39 and although the scar is still visible, it's not painful or uncomfortable in any way. Although it can be surgically removed, it never bothered me enough to take that step.

To this day I get asked if I was burned - usually in hushed tones, as if they're bracing for a story of an accident or abuse. Part of me wants to make up a tale involving frostbite on my second summit of Everest, but I suspect not everyone would get the joke. ;-)

Anonymous said...

My 4 month old has a hermangioma behind her ear. We were suppose to have it lasered but it was postponed because she was a premie and is gestational so young. They want us to wait it out. This weekend I noticed it kinda bothering her. It has now ulcerated. What do I do? Going to get a second opinion tomorrow. Got any advice?????

Momo2 said...

HI my daughter is almost 6 months and has a H on her left hip. It has ulcerated so our Dr sent us to a surgeon who wasn't very helpful. Basically he just told us to try to prevent from bleeding and fortunately he doesn't want to operate. We weren't given any info on keeping it clean and preventing infections. How did u treat her? Did u use any meds for pain? I know my daughters hurts her. We are scheduling an appt with a dermatologist so maybe we will have some questions answered. Thank u for the photos, it really helps knowing that this is such a common occurrence.

Anonymous said...

hi there
my 3.5 mth old has a H on her head, and in the last week, it's started to turn black in the center (looks like your 8 week photo). Is that "ulceration'? I'm putting olive oil on it to keep it moisturized - should i be doing something else?? thank you for posting these pics!!
maria

Sasha said...

Maria, honestly, I think the black means there is blood below the surface and you need to prepare yourself for an ulceration. That means the H is growing too fast for the skin to accomodate and it's going to break open.... You might try Aquaphor for now to keep it moist.

Sasha said...

Momo2, we didn't use anything stronger than tylenol because no one would help us. We did find out afer that fact that there are some pain mgmt options- there is a ointment you can use that helps with pain so ask for that.

Anonymous said...

thank you. i've tried to find info on the ulceration but can't find too much. Does that mean it breaks open and bleeds? god, that sounds scary. did you have an ulceration?

Sasha said...

Anon, yes, ulceration means the skin breaks open. Basically the H is growing faster than the skin can accomodate, so the skin breaks open. It can be an open wound for quite some time. Infection, bleeding, and pain and scarring are some of the problems ulceration brings. Where is your child's H located? What part of the counry are you living in?

Anonymous said...

We're in calgary, alberta. Her H is on the top of her head. I just went to see a doctor and he's going to try to push the specialist appt up (before Nov!), but says it's pretty normal and to just keep putting vaseline on it for now. it's just freaking me out now because it looks like a scab. she has 2 others, but they're much smaller and bright red (on her chest and on her leg).

Anonymous said...

HI sasha,
Just wanted to let you know that the black scab eventually fell off. I put vaseline on it very often to keep it moisturized, and there was no bleeding. Thank goodness! It still looks a little different (color) and a little dry, but it looks much better now. My doc managed to get my specialist appt moved up 6 weeks. thanks for your help!!
maria

Anonymous said...

hi,
My boy is 10 month old now, he has 4 hemangeomas on his back and bottom. The one on his bottom is very big and when he was 5 month old it ulcerated. His pediatrician send us to see dermatologist. He suggested also to see laser specialist and get second opinion about it. So I started doing laser treatments as I though it is the best thing to do, but now after 7 treatments the red is going away but the ulcerated place is much bigger and he got even infection. We saw first dermatologist again and he put him on different creams and it seams getting better and he suggested to stop laser treatments. I am so lost and confused what to do and what is the best thing for my baby. He been in so much pain in the last couple months....can you please help me with information what you did and what is really helping and whats not. Now also doctor is suggesting short steroid course..I so lost...I don't know anymore what is right and the best thing to do...

Becky said...

It is very nice to have someone who has been through this. My son is 8 weeks old and his H is under his earlobe. It has ulcerated and is now infected I don't know what to do I'm calling the dr tomorrow. I've been putting antibiotic oitment on it is that wrong is there something else I should be doing. It used to not bother him but now he is in pain. It is so hard seeing him in pain.

Anonymous said...

Thank you for your post. My baby girl has an H on her arm. It is ulcerated. We saw a dermatologist last week who wanted to do laser treatment and put her on a beta blocker. There is a study that BB shrink the H. The study only was 11 patients with severe Hs. They wanted to put my baby to sleep to do the laser. We were not comfortable with either of those options, so we are using a topical antibiotic for now. I hope it heals soon.

Aim said...

Hi there,
My son is now 6 months old, he was born with an H on his left breast. About 2 weeks ago it looked just like the first pic you posted, and now it has a tiny scab, and things that almost look like white heads. Would you be concern?
Thanks,
Amy

Cath said...

So great to find your pics, info and messages. My 14 month old daughter has a 5cm H on her left forearm. She has been taking the beta-blocker Propranolol for 6 weeks now and we can already see a huge improvement - it's now much paler and softer and cooler. It used to be very red, hard and hot!

I'm from the UK but live in Hong Kong, I've had so many people pulling at her arm to get a closer look in supermarkets, at bus stops etc... Am used to it now and can handle the looks and questions without getting so upset about it, but I just don't want her to experience any insensitive comments as she gets older.

Rita said...

My 5 month old daughter has an ulcerated hemangioma on her back. We've been to a dermatologist and have been treating it with Regranex for the last 4 weeks. It is very painful for her when we change her dressings and put the ointment on. Did you treat this in any way with ointments or laser treatment? It is so good to see others have gone through the same thing and the hemangioma looks exactly like my daughter's.

Rita said...

My 5 month old daughter has an ulcerated hemangioma on her back. We've been to a dermatologist and have been treating it with Regranex for the last 4 weeks. It is very painful for her when we change her dressings and put the ointment on. Did you treat this in any way with ointments or laser treatment? It is so good to see others have gone through the same thing and the hemangioma looks exactly like my daughter's.

Lola said...

Hey. It has healed well hasn't it? I have a 4 month old & she has a H on her bottom, right in her nappy area. The H has ulcerated & she is in great pain. It is sloughy (yellow) Ive been to see the gp & she's had a course of abx, I took her back as it had not healed & they sent me to a peadiatrition. Her blood results showed abnormalities, they sent her home the same day & said somebody would phone with a dermatology appt. When I rung up they said it wasn't needed & gp can't help. I feel so alone & I feel the wounds getting worse & worse & the analgesia isn't working. Does it need dressing/covering due to the area do you think?

Kristen Warner said...

Hi, Sasha - this was really helpful. Thank you for posting. I am wondering what kind of treatment you chose for her - it's clear you started it about 18 months from the picts???

My 2 mo. old son has 3 H's the biggest being a combo over his ear which is deforming his ear and we are leaning to trying the beta blocker over the steroid/laser treatment.

Love to hear what you chose and how you felt it worked. Also, if anyone you know used propranolol (the BB) they could email me too. Thanks so much!

kristen.warner@hotmail.com

Crystal said...

If anyone would like to know what this type of birthmark turns into: I'm a 27 year old female and have this on my upper arm where you usually see people get tattoos. It started as a small, bright strawberry colour spot when I was born and grew larger and faded. I don't know if it ulcerated like in these photos. But to this day it's very tender. It feels different from the rest of the arm - almost like breast tissue. And it's very tender and hurts to push on. If it gets hit, it's especially painful.

Anonymous said...

i have a lil girl thats only two months old, she was born with a hemangioma on her hand that covers about 60%. i was looking at her hand and i saw what looked like a dry patch of skin, i wiped it with a wipe and now it looks raw. no bleeding, but it just looks raw. shes going to the doc but i want to know from someone whos gone through it all, is that how an ulcerated hemangioma startes?

Sasha said...

Nov 4 Anon- did it have black coloring underneath where it started to look raw? Glad you are seeing a specialist soon.

Anonymous said...

no black but it looks like another layer of skin is coming off... i took her to the doc today and hes sending me to a dermatologist (sp). is skin peeling a normal part of hemangiomas?

Sasha said...

Anon.. re: skin peeling off: Not sure. WC's scab peeled off as it healed, but that was the only part of it that peeled off- the scabbed portion. Hope the derm can give you answers.

Aileen said...

Hi Sasha, just wondering did you have to put any dressing on the h? My 11 wk old has a h on her upper left chest which has grown in under her armpit a bit. It has started ulcerating and we have been told by a dermatologist to put adaptic (non sticky dressing) and just cover it with gauze to keep it in place. I have to clean it and change the dressing every day which is awful as I know I am hurting her.

Sasha said...

Aileen, we were told there were two schools of thought: wet and dry.

We tried keeping it moist and covered- using the vaseline gauze, ointment, etc. We found this was quite painful for her- the vaseline guaze still stuck to the wound and removing it for dressing change was terrible. But this method is recommended for keeping the resulting scars at a minimum.

We decided to leave it dry- no dressing at all and no ointment. Although they say this method makes scarring worse, we found her pain was dramatically reduced when we did this, and we knew her scar would be bad anyway, and that most likely we'd have to do a scar revision surgery later anyway. So we settled on leaving it open and dry.

But if you child's H is in the armpit area, leaving it dry would probably be impossible..... Have you tried having her soak in the tub and not removing the dressing until it is pretty much soaked off? I have heard it doesn't hurt as much that way.

Anonymous said...

my daughter is almost 3 monthes old and was born with an H on her right rib cage none of the dr s or nurses ever said anything about it. So i just assumed it was just a strawberry birthmark and it would either go away or stay. It did nt matter to me at the time. About 3 weeks ago i noticed it gettin bigger almost swollen like. About two weeks ago it had a little scab on it so it took her to the closest childrens medical center ER where they told me it was just a scratch and it would be fine. A week later it was a hole so i took her to a different childrens where they told me it was an ulcerated hemangioma and they set me up with a specialsts.In just a few days it grew and looked worse and worse. We had an appt with the specialist tues nov 16, on the 11th i was at work and got a call from my mother who was watchin Elaina and she was hysterical. The H had started gushing blood, soaked thru numerous bandages in a matter of minutes so we rushed her to cincinatti childrens hospital and they scheduled her for surgery the next day to remove it. Today is saturday Nov 13 a day after her surgey. She s doing great and already seems as if it s not as painful. The entire time it ulcerated it caused her a great deal of pain. Now she already seems more comfortable and not as fussy. Still keeping a close eye on her, as she did just have surgery but she seems great. thank u so much for sharing your story because it gave me alot of info that i needed to really understand what this was.

Anonymous said...

Sasha, did your daughter SCREAM when her ulcerated hemangioma was scabbed over, and someone touched it? It is causing my 4 month old a great deal of pain. I have an appt on 1/31 with a pediatric dermatologist to see what to do. Did hers ever become ulcerated again? Is that something that happens again and again, or is it typically once and done? Hers is also on her arm, but on the back of it, just above the elbow.

Angel B.

Sasha said...

Angel, yes, the scabbed area was painful to the touch. We tried not to touch it at all. Even during baths, we just poured water over it and didn't touch it. We ended up leaving the wound open and letting it dry out, because we found she was in more pain when it was dressed with ointment and bandages and "wet".

Is it possible for you to see someone before Jan 31? That is a long time to wait! Sometimes they will get you in sooner if you explain the pain and telling them the H is in the "growth stage".

Usually once the ulceration heals, it does not ulcerate again. I have heard that it can happen again before 1 year of age, but usually does not.

They usually start to involute (this means the volume and color of the H goes away) around 1 year to 18 months.

Let me know if you have more questions.

Anonymous said...

thanks for your response..we were able to get her in to a pediatric dermatologist this morning. once they heard it was ulcerated, we got top priority. Hers looks like your daughters did at about week 19. she said to keep it moist (interesting...) to allow the scab to come off. she said once the scab comes off she won't be in as much pain. we are scheduled to go back on 1/11 to see what it looks like underneath and decide if we should do laser. did you choose to do any sort of treatment? Did you have the scar removed later on? if so, when?

Angel B

Sasha said...

Angel- we did not treatment- since it ulcerated so badly, but healed spontaneously, we knew we'd be left w/ a cosmetic deficiency and that she'd need a cosmetic surgery later since it is in such a visible area. We did two surgeries- one right before she turned 3 and the other a few months later. If you'll click on Hemangiomas on the left side under "Sasha At A Glance" you should get a link to all my H posts and can see the results.

pouch said...

this is a brave blog post and very helpful to someone like me who has a daughter with an ulcerated hemangioma. We have been treating it with various soaks, dressings and proprananol for about 10 months and it doesn't seem to be improving half as quickly as your daughters has. It gives me hope to see that an hemangioma can shrink and fade - fingers crossed it will happen for my daughter too one day :)

Kristin said...

The pictures look a lot like my daughters. Her appeared on her bum 2 days after birth and within 6 weeks it grew to be 8 x 8 1/2 centimeters. Immediatley it began to break down and I even had to rush her to emergency because it began to bleed. It took 45 minutes for the bleeding to stop, I was very scared. We went to the Alberta Children's Hospital where we spent almost one month. She was on morphine and gabapentin for the pain as she was unable to sleep or even move. This was all before her 2 month birthday, she was and is an extremely brave girl. They began administering propranolal and it is helping but her skin is so thin and frail that she keeps getting skin tares. She has another on that just won't close and she is once again in pain. She just turned 8 months and hasn't had a bath since she was 4 weeks old. Next month we start our monthly trips to Calgary again. Thanks for sharing your pictures as it helps me and others know we are not alone.

Katy said...

The information on this blog has helped me greatly when my own doctors couldn't and wouldn't, thank you so much for sharing your little one's story. For those of you out there whose children are going through terrible pain, hospitalizations, conservative topical or oral treatments......consider surgery. My four month old had a 3x4 inch ulcerated hemangioma on her back excised by a pediatric plastic surgeon a month ago and she is a new baby! Surgery should never be taken lightly especially on an infant but my daughter healed in a few days as opposed to suffering 3-4 months of excruciating pain while it healed on its own. I went through hell and back to get her the right treatment, I flew her halfway across the country to the Children's Hospital of Wisconsin for the surgery and I don't regret that decision one bit. Check out their birthmark and vascular anomalies center website.

Jensen said...

hey , im a 15 yrs old male from canada and i have a H on my right tip of toung, i had it removed when i was 8 when it first appeared, after then it came and went, but last year it got really bad and i got lazer done, for 2 weeks it hurt but then it went away, but now its back. and its not going away like it used to. i found this by google and was wondering if you or anyone else could help because people point it out alot and its embarassing.

Sasha said...

Jensen, what kind of a doctor do you see for your H? We had great luck with a plastic surgeon who specialized in vascular anomalies. There are also quite a few ENTs who are trained to deal with Hs since most of them appear in that area. Keep me posted if you can.

Lana said...

I have a 3 month old girl with a big H over her left shoulder and right under the armpit. Her H ulcerated underneath the armpit before I even knew what an ulceration was. She was crying at the top of her lungs so I finally took her to the ER. There they hospitalized her gave her IV antiboitics and started her on propranolol.I was also given Bactroban ointment to apply over her ulceration. The hemangioma definatly shrunk and everything was perfect until about a month later when the H begun again to ulcerate over her arm ( def loaction). Again she is very uncomfortable and in pain. I gave her tylanol last night and it soothed her. I have been putting on the ointment and covering it as directed but i feel like its cusing her more pain when its covered and wet as opposed to opened and dry.I have an appointment with specialist tomm. I dont know what else he can do for her..ireally wish there is something else..it hurts me so much to see her crying like this...

renaenix said...

So my 4 month old has a H on her back. It looks very similar to this picture. However they have told me to cover it up with a bandage and it just looks gross and infected.It is just wet and covered. I was wondering what you were told to do to help it heal.

Sasha said...

Renaenix- if it is in a spot where clothes touch it, it is probably best to keep it covered..... and you've got to keep it wet to keep it from sticking to the bandage and causing pain and bleeding when you change the bandages.

I do know what you mean about it looking gross. I have been told that all ulcerations heal in time. For us, since WC's was on her arm, we ultimately decided to let it dry out because it seemed less painful for her. They had recommended keeping it covered to minimize scarring, but at that point we already knew she'd need plastic surgery, so we weren't worried about scarring.

So sorry you are having to deal with this...

Mrs. Cathey said...

Thanks for sharing this. My 4th month old has one on his head and it broke open and bled a lot a week and a half ago. We went to the pediatrician to find out it was infected. We did antibiotics and then went to the dermatologist. They said it has ulcerated so much that they need to take action to shrink it fast to reduce risk of future infections. We have now been referred to a hematologist. I'm scared for my baby and can't find a whole lot of info on treatment for this. Thanks for sharing your story and I'll take any advice you have!

Anonymous said...

This blog has been so helpful! My 4 Month old daughter has a hemangioma on her right elbow that looks just like these pictures! For the last 2 weeks we could tell it has started becoming painful for her and if someone or something touches her arm suddenly or the wrong way she cries out in agony! We have been looking to get her into seeing a dermatologist for about 6-8 weeks now and finally have an appt tomorrow! Hoping to get some answers bc her pediatrician just didn't seem to have a clue :-( -Leighanne

Anonymous said...

Same issue here! At 4 months our daughter had an ulcerated open hemanginoma on her butt. Pedatrition told us to cover it with Lanolin cream. After 4 days it became worse/and draining causing it to look and smell as if infected. At ER now due to this possible infection. Told to see a "vascular anomaly" specialist not dermatologist

Anonymous said...

Hi this is Leighanne again. I posted the other day stating that we were finally getting in to see a dermatologist. Well the dermatologist was not a help AT ALL! All he did was basically read the definition of hemangioma to me and tell me he wanted to see us again in 3-4 months to track it's size. When I mentioned to him that it was causing her pain he looked at me like I was a crazy mom just reading into something that didn't really exist. The only advice he offered was to put aquaphor on it. I put it on her twice so far and it seems to make it worse and makes the scab rip off and bleed and ooze and she is in so much pain. I'm feeling helpless and don't know how to help her be the happy baby I know she is when she isn't in pain from this! :-(
-Leighanne

Sasha said...

Leighanne- I too found derms unhelpful. I would try to find a vascular anomaly specialist.... where you are located?

Sasha said...

Also, Leighanne, check out this post with some info on specific doctors I had contact with and recommend.

http://www.sashasays.com/2009/09/more-hemangioma-information.html

Anonymous said...

Thanks so much for your input Sasha! I found a dr on the Vascular Birthmarks Foundation website in my area. I have an appointment this upcoming Thursday. I really hope they can help us. Because it is on her elbow it is in a spot that she constantly hits into things and it's so painful for her. It's been bleeding and oozing for a week now and stains all her shirts. I tried wrapping it but bc it's her elbow it's fairly difficult to wrap. Here's to hoping Thursday will offer some answers for us! Thanks again!
-Leighanne

Gill Trott(Bexley, England) said...

Thank you for putting the pictures on the web, one of my twin grandsons has a large H on his right arm, just above his elbow. It looks so much like your daughters and has just recently scabbed over. The docs don't seem that bothered, but they have a paediatrician appt in 3 weeks for growth(they were 8 weeks prem). We put olive oil cream on it at every nappy change, but he is starting to get a little distressed when we go near it so will make sure that he is referred to the right person.
Thanks again for these pics and I will show them to my daughter too, so she can see how well it has healed up.

Anonymous said...

Thanks for posting your baby's pic's. It's very helpful for parents that search for this types of H. It's very hard when your little one is diagnosed with a Hemangioma you don't know what to do, you feel anger, sadness fustration. Currently my little one was diagnosed with a nasal tip hemangioma we decided to treat it instead of waiting to grow, so far we are on day 10 treatment with propranolol so scary but there is a slight change to its size it has decrease a little, there is a chance of ulceration im hoping it doesn't its already painful for my poor bb.

Anonymous said...

My name is Maria I posted a message back on August 30 nasal tip hemangioma i just wanted to say that my little one is doing so well the dose has been increased to a .9ml propranolol you can now see the changes her nose is smaller and getting better thanks to message mentioned aboved a did a search and found a dr that has been in touch with us and has helped in questions as a second opinion since he is New York and we are in texas Dr Levitin here is his e mail if anybody wants to contact him and asks questions reg H glevitin@gmail.com or if you reside in New York maybe he can check your baby's H. Thanks

Anonymous said...

Hi,
Thanks Shasha for sharing your daughter's pics and story. I'm glad to see her recovery :D

My dauther has H. on her diaper area and last week it started ulcerating and bleed once since then. We had to take her to ER. Now she is on b-blocker- Nodalol oral therapy (today is third day). As per the drems. it will take a couple of weeks to heal the ulcers. Hopefully it won't grow bigger.
I have to give her tylenol a couple of times/ day or more whenever she seems in pain (esp. after poo diaper changes :(.....

Any advise from anybody it treat the ulcers better?

Thanks!

Anonymous said...

Maria, I know it has been 3 1/2 years since you were going through this, but I found this info very helpful! Just have a question....did the H ever ulcerate? What you explained is exactly what I'm seeing on my little girls H on her head, black scabs in the middle of the H, they fell off....now I'm wondering what to expect next.....I know its a long shot trying to get a reply, I'm just a very concerned mom :)
Thanks! Michelle

Sasha said...

Michelle, if the scabs have fallen off... the ulceration may be DONE. How old is your little girl? It may be that the growth stage is over, so you won't have any more ulceration (ulceration happens when the skin can't accomodate the growth of the H and breaks open, so if the growth stage is over, no more ulceration). HTH

Anonymous said...

Thank you for replying back! And thank you for sharing your babies story, it has been really helpful to me and my husband! My baby is 5 months old and her H on top of her head has become really dry and flaky and the black spot in the center appeared and looks like a scab, she'll sometimes itch it, I'm just worried that it is going to start to bleed, how much longer will it grow and at what point does it start to shrink? Does the black in the center mean anything?? Thanks!
Michelle

Laurie Poyiatzis said...

Can you tell me whatever happened with your baby and the hemangioma? My 7 week old daughter has the same thing in the same area and it looks to have ulcerated. We have an appt with a specialist in a few days. She seems to be in a lot of pain.

Sasha said...

Laurie, the ulceration healed when she was about 5 months old. We ended up doing two scar revision surgeries to remove the scar tissue from the ulceration- one surgery before she was 3 and one right after. She's 7 now and has a thin scar where the big scar used to be- much better. I am sure as she gets older the scar will continue to fade.

Betzy Diaz said...

Hello, I just had my daughter on feb 28, and she was born with a small flat birthmark, but 2 weeks after it started to grow, and its a hemangioma, it looks exactly like the one your daughter has, the first pix. it looks gray in the center, but her's is in her forehead.
I just noticed a small ulcer, I don't know how it happened, maybe she scratched herself and it feels like a bump inside i'm worried. Can i ask you a question? did they give you the option of surgery and if yes why didn't you go for it, what have you find about side effects and stuff.

Sasha said...

Betzy, they usually don't recommend surgery in babies unless it just can't be avoided- the majority of Hs will completely go away as the child grows and surgery is usually only needed if there is significant scarring or skin stretching. We did have one doctor who said he'd do surgery when she was 5 months old, but the ulceration started to heal around that time so we decided to wait on surgery until she was older since it would be less risky. About ulceratios- know that they don't happen because of scratching or bumping- they are happening because the outer layer of skin can't accomodate the growth of the H and breaks open because of that. Do you have a doctor in your area who is familiar with Hs? Please let me know if I can help further.

Bree SMith said...

My daughter had exactly the same hemangioma which started at 4 months old. It was located on her left inner thigh which made it difficult because the diaper area was adjacent and infection was a constant.
This was back in 1990 and I took her to the Vancouver children's hospital and the doctors kept telling me it would go away. it grew and grew until it was approximately 6inches by 6 inches and kept getting ulcerated. I begged for surgery but the doctors were adamant it should go on its own. they didn't live with a baby in constant pain, they didn't have to keep paying for the antibiotic creams because of infection.
I moved to Nova Scotia and when my daughter was 10, she had surgery and it was the best thing ever. Because we waited so long, she now has a 7 inch scar and some of the hemangioma traces on either side of it. She is now 23 years old. Parents, if you can have it removed,I would say do it.

Shasta said...

I know this post was a long time ago but thankyou for posting this. My daughter has a hemangioma on her left shoulder that has ulcerated and its good to see the timeline of how long it took to heal. I've been feeling miserable since it hurts my daughter a lot.Did you keep the hemangioma covered mostly? I've been keeping it covered along with using a topical abx due to her trying to itch it a lot.

Sasha said...

Hi Shasta! We tried both wet and dry, and found that using ointment and dressings made it more painful for her, somehow. So we ended up leaving it open and letting it dry out and form a hard scab. That seemed less painful. And then of course you can see from the pics that the scab started falling off gradually and the ulceration slowly healed.

Shandi Lefsrud said...

I need to know.if.anyone elses babies H had a foul smell to it? My son's got infected and.he finished his.antibiotics and the swelling went down.drastically but now it has smelt bad for the last few days? It is hard telling family because si many have not seen this before and act like it is all the end.of.the world he is a happy healthy baby but.I.have read a lot on H and am comforted that there are so many more people going through the same thing. When it scabbed and family seen it was like I was a horrible person because I let it get to that but reading over the past five months I see this can happen I am just worried about the smell of the H now some one please help!

Sasha said...

Shandi, my guess would be you still have an infection on your hands. I'd call and ask for more antibiotics. Reese's H never had an odor. I was already told if there was an odor, there was an infection.

Shandi Lefsrud said...

Thank you. I took him to the Dr and he said.it didn't look.like any infection was left and it'. Due to the scab still.on it. He told me to put some polysporn on it to help the scab come off.

Anonymous said...

Hello, I didn't read all the comments but didn't see many from adults with them and thought I'd share. I am 33 now but I was born with/developed as a infant a hemangioma about the size of a tangerine on my chest. It stayed cherry red until I was 12 when it eventually faded and sank. Now other than a few bumps you would never know it was ever there. I do have 15-20 very small (pencil eraser to pinhead) ones now and every few years I find a new one but nothing as dramatic as that first one. I also have several larger ones inside my spine. Doctors say unless I need spine surgery for some reason they shouldn't be a problem.

Lina said...

Hi, I was doing some late night browsing and came across this blog. Sasha I know its been some years now but it makes my heart wrench to see your baby's H.
My premature baby has one that looked just like it on her bum cheek. It began to ulcerate three months after she was born. Her's however never turned black like that.
Here in the UK medicines are covered. We were referred to Great Ormond Street hospital. We were prescribed special dressing such as mepitel and sorbsan initially as well as polyfax ointment and diprobase ( basically vaseline). My biggest fear was an infection being exposed to wee and poo. After two weeks of using polyfax I felt like it was getting worse. I was vigilante with changing her dressing at every nappy change. I stopped using the polyfax and diprobase after two weeks and instinctively began using my breastmilk. I Just expressed it directly and covered it with dressing. The doctors seemed amazed at the healing. So far two tests revealed no infections. As the ulcer spread from one site to the next I continued the breastmilk at every dressing change. I switched to Allevyn life dressing and Mepitac. These are silicone based and do not traumatize the H during changes. I expressed breast milk on to the ulcer site, put diprobase on the rest of the H so the dressing would not stick to the H and only the skin around it. A bit tricky being so close to her vagina but that's where the mepitac came in handy. My main goal was to keep wee and poo from coming in contact with th H. She is 5 months now. So two months of hell. It's still ongoing and I am trying to prevent further ulcers by keeping it moist but all the open sores are 99% healed and 50% of the H has ulcerated. I still keep it covered for now but stopped the breastmilk as there aren't any open sores. I should be giving the specialist an update soon.
My baby has stopped screaming during bath time so I know she is feeling better. It's ongoing as of March 2014 and she is 20 weeks old, so I can't say how it will continue but I feel confident at the moment for managing it.
The dressings are very expensive so I feel for parents outside the UK and very fortunate that I am not paying for it directly as I would have spent thousands by now.
At the beginning I changed here dressing 8-10 times a day but with the allevyne life I only changed with poo or if the dressing edges lifted. I am tempted to share my experience with photos as well after seeing so many parents with suffering babies. Thank you Sasha for sharing with us.

Anonymous said...

Hi there sasha, is your email still the same? I emailed you a little while ago. I do hope you get back to me as my baby has an H almost in same spot as yours only closer to the elbow. My boy is 21weeks right now but his H looks more like your babys at 17weeks. Am worried and it freaks me out just to change his outfit. Doctors say it looks okay and will clean up on its own but it doesnt make it easier. Did you bandage your babys? Because last time we did that it seeped so much that when I changed the bandage it ripped the scab off completely, and obviously hurt my baby. Broke my heart. Would love to hear back from you. Ta

Lina said...

Hello to anonymous, I'm not Sasha but I thought I might give you some insight. My baby has an H on her bum and as you can imagine this was the worst place to have an ulcerated H with wee and poo. None of the doctor prescribed ointments worked in fact made it much worse. Actually doctors are quite blase about it and don't seem to fully comprehend the pain and agony to parent and child. You can't ignore it and wait for it to go away, it needs to be maintained and to skin should not be allowed to dry out. Long story short, out of sheer desperation I used breast milk on the open ulceration. Just squirted the milk right on it and then used diprobase (although not crazy about using petrol based ointment) on the surrounding non broken skin. Then cover with silicone dressing like Allevyne life, which does not adhere nor harm babies delicate skin. My LO's H healed and closed within days ans it was pretty bad and getting bigger. Another spot ulcerated and I used breastmilk on it cleared up within days. The H has not ulcerated in the past 31/2 months since I treated it. Docs were impressed. H is now even starting to regress around the edges, changing to skin tone and starting to look slightly deflated. I know it will take time but it's not the nightmare it once was. Still keep it covered and moist. Been using Australian pawpaw ointment, which is NOT petrol based. Been meaning to do a write up of this with pics to help other mums much sooner but LO and two Bigger ones keep me pretty busy. Hope that helps. Any questions please ask.sorry for short sentences but baby is moaning and typing this fast on my phone.

LinkWithin

Related Posts with Thumbnails