Infantile hemangioma

[staralfur]

Hey, just wondering if anyone else has a babe with infantile hemangiomas?

We've had an absolute nightmare time with our LO's, it's in her diaper area (right between her bum cheeks!) and it's been ulcerating and all sorts of nasty things since she was about 2 weeks old.

We saw three different doctors that said it was a yeast infection and FINALLY got it confirmed today by a specialist that it's a hemangioma.

She said that they eventually shrink and disappear but I've been reading about people with older kids that have them and I'm really worried about the pain persisting for a long time and trying to potty train her with it there.

Anyone have any experience?

 

[DaisyBee]

Are you talking about a hemangioma birthmark? Red, raised, and gets bigger?

Megan had one in her eyebrow area but it shrunk and faded faster then we were told it would. It only got to be the diameter of a pencil. You would never know she had it - it's been gone for a long time.. Can't remember when though.

Is it getting irritated? Is that why its causing issues? Can you keep it covered with diaper rash cream or aquaphor or something?

 

[staralfur]

Yep.

Abby's is quite large, covers the entire inside of her bum from top to bottom. We use Desitin but if it doesn't improve any by next month they're putting her on medication.

Thanks for sharing. I hope Abby's goes away quickly too!

 

[DaisyBee]

Is the medication going to shrink it? I was told they wouldn't do anything for megans unless it was causing issues..and sounds like your lo's is causing issues. I would think in that case it would be best not to just leave it and wait.

 

[staralfur]

Yeah, it would potentially speed up the process of disappearing. It's called propanolol. Can't say I'm terribly fond of the idea of giving a six month old a beta blocker, but it could be the lesser of two evils.

We were using the Desitin in conjunction with prescription antifungal cream, which was doing more harm than good, so we're using only Desitin for three weeks to see if it can be controlled just using zinc oxide until it sorts itself out. I'm just concerned it's going to be years before it does.

 

[yegane]

I would think in that case it would be best not to just leave it and wait

 

[lauren10]

my DD has one on her hand (which they first said was a hemangioma, then changed their minds and called it a vascular malformation). Either way, we used propanlol when she was super young (2 months?) and either it helped, or it faded on its own. They tell me it could come and go throughout her life. It's pretty big...covers part of her wrist and extends to inside her palm. They also told me laser surgery later in life could improve it. (for cosmetic reasons)

As for on the bum...I'd keep using the drops for the recommended time, as it might help. I feel for you because it would be really hard to protect that area! probably giving her lots of time with the diaper off would help keep it dry.

 

[charleosgirl]

my LO has one on her forehead but its small and never bothers her. My doc said they do shrink over time.x

 

[staralfur]

As for on the bum...I'd keep using the drops for the recommended time, as it might help. I feel for you because it would be really hard to protect that area! probably giving her lots of time with the diaper off would help keep it dry.

You're right. We had her with her diaper off all the time when we thought it was a yeast infection but stopped when they told us it was probably something else.

Did your LO have any side effects from the propanolol?

 

[JenniferAnn]

Hey I see that this post is from sept. but my 7 week old baby has one on his cheek its been there for a few weeks and its about the size of pencil eraser and its really red, he also has one under is eye but that one is new and tiny still I just went to the dr today and they wanted me to put him on propanolol (sp) but im scared to do it since they want me to take him to a heart dr, first and then if hes on it they said he has to eat every 4 hours.. I wanted them to just laser it off but I guess its not that easy.. did you ever use the propanolol?

 

[staralfur]

We actually just started her on it this weekend. Creams and stuff worked okay for a few weeks at a time but then it just went back to ulcerating again. So we decided to go ahead with the propranolol.

So far it looks the same (though it's only been a few days so I guess I shouldn't expect much for now) and she hasn't had any side effects.

Why does he have to go see a heart doctor first?

 

[JenniferAnn]

From what I was told nothing helps it but these medicines or laser or surgery.. but the dr. today told me that if I put him on the medicine I have to take him to a heart dr to get it cleared that he is ok to go on the medicine since it is a beta blocker, and the first dose will have to be taken in the hospital and he has to stay there for 5 hours so they can watch him and take his sugar since it can cause low blood sugar, he told me that he has to eat every 4 hours I must wake him if hes sleeping cause seizurs can happen if his sugar gets to low.. so all of this freaked me out.. he said its just precautions they have to take with this medicine but he said its all rare and its safe to take and it will stop it from growing but he has to be on it for a year and in a year they will be gone.. I just don't know what to do.

 

[staralfur]

Hmm, must be because he's still fairly tiny, we were never told to do any of that.

From what I've read it is incredibly safe in general, they just haven't done extensive testing on infants. I was pretty apprehensive to give it to her as well which is why we tried everything else we could think of first.

But so far so good.

 

[JenniferAnn]

That makes me feel better Good luck to you from what I heard it works so im sure it will get better very soon!

 

[staralfur]

Same to you!

 

[mtmnleg]

My LO has one on her back that is getting larger and the dr said that hers will prob get bigger and then go away by the time she is a year old, but it is getting quite larger. There is also one they think on her thigh but it hasn't raised up yet, just looks like a rash so far..

 

[ShelbyLC]

One of my twins has one on her belly. It's small and hasn't raised up much yet. It hasn't caused any problems, we've just been told to be careful with her clothes as she gets older and make sure the waistbands of her pants don't rub and irritate it.

https://i873.photobucket.com/albums/ab294/shelabama/T3small-1_zps384e143d.jpg

That picture is 3 weeks old and you can see the mark just above her diaper. It's actually bright red in real life, my phone's camera just isn't very good.

 

[staralfur]

My doctor kept saying they go away around a year as well but I keep reading about people with toddlers that still have them, so I'm not sure how common it is.

 

[mtmnleg]

One of my twins has one on her belly. It's small and hasn't raised up much yet. It hasn't caused any problems, we've just been told to be careful with her clothes as she gets older and make sure the waistbands of her pants don't rub and irritate it.

https://i873.photobucket.com/albums/ab294/shelabama/T3small-1_zps384e143d.jpg

That picture is 3 weeks old and you can see the mark just above her diaper. It's actually bright red in real life, my phone's camera just isn't very good.

That's what LO has on her thigh too! How are the twins doing Shelby?

I hope they go away around a year it looks painful!!

 

[DaisyBee]

https://babyandbump.momtastic.com/baby-club/281716-strawberry-birthmarks-2.html

This is an old thread where I talked about what my dr told me about them. What sun mentions about the 5/9 rule is what my dr said as well. And had forgotten I have a pic of Megans on this thread!