Hemangiomas - Mothering Forums

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#1 of 11 Old 11-11-2011, 11:03 AM - Thread Starter
 
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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?

 


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#2 of 11 Old 11-14-2011, 10:26 AM
 
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What did you find out?

 

 


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#3 of 11 Old 11-14-2011, 10:36 PM
 
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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!

 

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#4 of 11 Old 11-15-2011, 06:49 PM
 
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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!)

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#5 of 11 Old 11-18-2011, 01:58 PM - Thread Starter
 
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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.


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#6 of 11 Old 02-16-2012, 06:44 AM
 
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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.

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#7 of 11 Old 06-27-2012, 06:25 PM
 
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 I want to thank  kjhdavis so much for your post. It is exactly what any mother in this situation needs to read. My daugther is 3 months old and she also has an hemangioma in her right eyelid. I live in Miami and my daughter is being seeing at the Bascom palmer eye Institute but I also have an appoinment with a dermatology in the Children Hospital. Since you mentioned the Children hospital in your post I wanted to ask you in what state you live.

Again thank you so much for your post!!

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#8 of 11 Old 07-08-2012, 01:48 PM
 
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I have twin girls they are 9 months old my one daughter has hemangomias on her roof of her mouth, her back an her temple...she's is taking propanol but none of them are getting smaller, I'm concered because she got her first tooth yesterday an also what are the chances she could have them internally???????? She is seeing a specialist in hershey but I don't think they are doing enough for her. I think ill be soon taking her somewhere better Please help i would like answers..my other daughter doesn't have any at all.
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#9 of 11 Old 07-20-2012, 05:03 AM
 
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My youngest was put on propanolol by a specialist. It went from being the size of a grape to barely noticeable. Id recommend that drug for anyone that has those. His was right by his soft spot on his head.
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#10 of 11 Old 11-21-2012, 11:46 AM
 
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Hi,

Me again. I can't believe it has been over a year since I first put up that post about my daughter's experience. Thank you all for the positive feedback. I hope it helped someone.

My daughter is now 3 1/2 years old and is doing great. Her hemangiomia continues to fade. I never receive any comments/questions like I did before. and on the rare occasion I may be asked how she got the 'rash'.  That is music to my ears.

 

Recently, while waiting in a check-out line, I saw a young couple with a baby girl (about 3 months old) who had a hemangioma on her forehead. I didn't know this couple so I was hestitate to say anything to them, yet I couldn't let them walk away without asking if they heard of propanolol. Whether one decides to use it or not is personal. I just want people to know that there is an option out there. An option that works.

I struggled with myself -- do I impose on them or not. Finally I did. At first they were taken back, but then they opened up to me and seemed relived that I had similar experiences. It turns out they did hear about the drug, but were going to wait.

 

I am located in Ottawa, Canada and we have a wonderful Children's Hospital here. I am very fortunate. Because I have been so fortunate, I feel the need to start a support group. This effects everyone. the hardest part for me was the lack of information.

 

I am interested in your experiences, please keep the communication open.

 

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#11 of 11 Old 11-21-2012, 04:26 PM
 
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Hi,

Your daughter is sooo beautiful. By looking at her picture now I wouldn't tell she had a hemangioma. I posted about my daughter when she was 3 months old. She has a hemangioma in her upper eyelid. She is now eight months and she is doing great. She has been seeing by Ana Duarte at the Children hospital in Miami and she is under propranolol. I am soooo happy with that medicine!!!. It is a miracle. Her hemangiona did not grow too big but because of its location it was a threat for her vision. She has been taking propranolo for 4 months and it definitely stopped it from growing and also shrank it.

I feel the same way about helping other mothers in this situation. I was so desperate when I knew my daughter had a hemangioma that now I want everybody to know that there is a treatment and it’s called propranolol.

The first specialist that saw my daughter was an ophthalmology. My daughter was one month old and there was just a little red dot in her eyelid. It looked like a bite. As soon as she saw her she told me that it was a hemangioma and that there was nothing to do, that we had to wait to see how big it would grow. I was not happy at all with that answer and I took my daughter to the Bascom Palmer Intitute but since the hemangioma was not affecting her vision they did not put her under any treatment. By that time my daughter was already 3 months old and the hemangioma kept growing. I had done some research and I knew about the propranolol and all the good results people were having, but it seemed that no one was able to treat my daughter with that medicine.

Finally, after many hours of reading online, I found Dr. Ana Duarte. I got an appointment one month later when my daughter was 4 moths old. As soon as she saw her she told me that we could start with propranolol that same day!. She sent my daughter to a cardiologist just to rule out she did not have any preexisting condition. That same day she had her first dose and after an hour they checked her blood sugar, heart rate and blood pressure and everything was  fine.  

 My advice to every mother in this situation is to see a dermatologist as soon as possible, Do not wait to see how big it gets because then is worse for the treatment. Then you can decide which treatment you think is the best but at least find doctors that are willing to do something!!!!

 

I am going to try to post some pics later because this page does not allow me now.

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