Hemangiomas

[MrsMike]

I hope this is the correct forum for this.

 My daughter is 3 months old and has 3 hemangiomas. She has a tiny one about 1/2 inch away from her eye, another on her inner thigh and another large one on one labia. It's the one on her labia that is concerning us the most as it's gotten so much bigger since we first noticed it. We thought it was just an irritation/diaper rash at first. When it didn't go away we had the ped look at it and he thought it was possibly a hematoma - it was still small and flat then. It's obvious to me now that it's likely another hemangioma. With it's size I worry about blockage. We have an appointment with the ped today to re-check it and to discuss referring her elsewhere (pediatric dermatologist?).

 I have myself freaking out. I've read over and over that children with 3 or more external  hemangiomas are more likely to have them internally. So that has me really worried. And now I'm reading about treatments such as surgery, laser therapy, propanolol and steroids. I'm so scared that what's normally considered a harmless common birthmark can be something a little more involved with her. It breaks my heart to think about putting her through anything such as surgery or laser, and the anesthesia to go with it, or risky meds such as propanolol and steroids.

 Anyone else have experience with this?

[KatWrangler]

What did you find out?

[mrsfru]

My son only had one hemangioma, on his head, but I have to say it was crazy how fast it grew.  In probably less than 2 mos, it went from looking like a bug bite to being bigger than a pencil eraser.  He was a preemie and preemies are more prone to them.  It was very obvious on his head for quite a while.  I don't remember exactly when...but I think by the time he was 2, it had completely involuted (disappeared).  It left a hollow purplish spot for a while, but now (he's 6) I can't even tell you where it was on his head.  I can't even find the spot anymore.  

I hope that will be the case for your dd as well.  I know it's upsetting to see such a thing on  your child and know that there may be more unanswered questions ahead,.

GL!

mrsfru

[chiefmir]

I was born with a hemangioma on the right side of my face (just under my ear) that grew until it was the size of a grape fruit and then had shrunk so much by 3 years old that it was no longer noticible... at ALL!

My 16 month DD (3rd child) was born with a tiny hickey looking mark on her neck, near the left side, under all the infant folds, and by two weeks, it was clearly a hemanigioma. It grew VERY fast and large, and it was easily the size (and color) of a huge plumb by 6 months.  We DID end up doing laser treatment 4x (each time was about 5 seconds total, spaced over 2 weeks).  We wouldn't have done it, except that her hemangioma had started to ulcerate and was causing her a great deal of pain anytime she moved or was moved.  Her seatbelt, any shirt collar etc would dig right into it :(  so we used the laser to close up the sores and then had her in a huge bandage for several months just to act as a physical barrier so nothing would get into its folds and irritate her again.  We were seen at the Children's Hospital of Philadelphia, and propanolol was never really an option we considered...there just wasn't a need.  If her hemangioma had been impinging on an airway or on her line of sight (impacting the development of vision) we'd have done it.  We DID end up using Timalol, which is a topical medication used for glalcoma, and we think that helped.   In the end, hers is still very much there, but it had stopped growing by 9-12 months, and there are clear areas where it is involuting.

Don't worry yet!  I know a LOT of kids who have hemangiomas, and none who had any other issues besides the cosmetic (and that bothered parents or grandparents way more than 1 or 2 year olds!)

[MrsMike]

We saw her ped. He wanted her seen right away. He said it's at very high risk for ulcerating considering it's on her vulva and it can get urine and poop on it. It IS changing color, which has him worried about potential ulceration. The other worry is that it can block her urethra because it's so large and still growing. He referred me to CHOP. It's taken me days just to be able to speak to someone and then they would only tell me to have her ped file an expedited referral, which he did. I just spent 2 hours on the phone with CHOP trying to set her appointment. They were going to give me an appointment for this coming Monday. Then we hit a roadblock as they went through her info and determined they don't take her medicaid insurance. They said I can still come in, but I have to pay out of pocket (despite CHOPs website claims that it works with uninsured families...) and that the minimum an appointment could cost is $200, but that it can be a lot higher. I kept the appointment for the moment, even though we don't have the money.  I don't know what to do.

[kjhdavis]

Hi

I wanted to write a few words for parents out there whose child has a hemangioma and a medicine treatment called Propanolol.

When my daughter was born in Janaury 2009, a hemangioma developed on her face -- on her eyelid, temple and the side of her face to be exact. It started off as a purplish, blue flat mark. Almost like a bruise. Within one month it started to rise and become increasingly red. I had no idea what to do. The doctors kept telling me it was 'strawberry mark' and will go away.

It didn't. In fact, it grew. It was a dark red rasied mark. Her eyelid was quickly closing shut and her cheek was swelling. Still - I had no answers. She didn't seem in pain. At least that gave me comfort.

For three months, I went to doctor after doctor after doctor. Finally I found a doctor who said to me " listen, I am not specialized in this area so I am going to refer your daughter to a general surgeon".

at least I was getting somewhere.

We went to see the Surgeon, who took one look at my daughter and immediately sent us to see a dermatologist. I am very very luckly to live in a city that has a specialized Children's Hospital. Once you get referred in, you have many resources.

We saw the dermatologist that day. Who explained what a hemangioma was. His concern was that it appeared my daughter had a segmented one. The mass commenced behind her eye socket - flowed to the eyelid, cheek and inside her mouth. This was a sign of a possible disease called PHASES Disease.

It took a lot of testing - xrays, ultrasounds, MRI, cardiograms and countless consultations. I also have to admit that I was adament that some kind of treatment be done. I pushed and pushed. I even ran aroudn the hosital chasing my daughters medical records for doctors. I wasn't waiting for them to be 'sent' along.

I was very lucky that her dermatologist specialized in hemangiomas and had started using a drug called Propanol to treat the hemangioma. Propanol is a very old drug -- most commonly used for heart issues. It lowers the blood pressure. It was found that it has a positive result in decreasing hemangiomas. What I found frustrating is that there is no research of this on the internet. No one to provide their experiences. I can't tell you how nervous I was. But it was something that I felt we had to do.

When my daughter was 5 months old, we started the treatment. Three oral doses a day for one year. I had to check her heart rate three times a day as well.

We also had to go into the hospital every second day to have her vitals checked. And blood work done weekly. Thank goodness, she always checked out ok.

I admit -- it was tiring. somedays, I didn't want to go the hospital AGAIN!

This was my life for one year. Everything revolved around my daughter, her medicine and the hospital.

I am very, very glad to report, that over time her hemangioma decreased. It was slight at first. It went from an angry red, to a softer red, then pink. Then it's size started to decrease. Over time, months in fact -- it faded.

She is now 100% off the medicine, and I haven't seen any side effects. The only thing I see is that my daughter is flowering -- minus the gigantic hemangioma on her face. She still has a faint pink mark. In time, I am told it will go away. I don't even notice it anymore. She is thriving and so am I.

I guess the point of this long winded story is to say that there is help out there. There are others in your same situation. We know and understand the emotional toll it takes on you. Don't be afraid to ask. And remember: YOU are your child's voice. I can't say enought about the benefits of using Propronol. I truly believe it saved my daughter.