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  #1  
Old 04-26-2010, 04:50 AM
mkrzarmomma2 mkrzarmomma2 is offline
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Question new here

Hi new here and looking for info. After five doctors, and three trips to er, my 5 month old has been diagnosed with ulcerated hemangioma. Her new dermatologist has given me a few options. Steroids. Which would mean a weekly drive to springfield which is five hours each way. Hosptial admittance-which would mean pumping her full of beta blockers and (sp?) propantenal. He told me that with these meds have cause seizure, stroke, high/low bp and bs. Surgery-outpaient surgery that would take care of it for good. Im not trying to rush suregery but the other options dont seem great. any advice would help?
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  #2  
Old 04-26-2010, 06:48 AM
nadinelk nadinelk is offline
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Hi there, I'm so sorry you are going through this. Who has been giving you this information on treatments? Is it your local pediatrician or a ped. dermatologist or is it the doctor in Springfield that you would be visiting?
The reason I ask is because there are many towns doctors (including mine- Las Vegas) who lack real experts in the field. My son, now 20 months, has had a deep cavernous hemangioma since he was 2 weeks. We traveled to San Diego to see a specialist because the local doctors were not helpful at all. We began propranolol treatments for him at 2 months through 13 months. On propranolol, there are virtually NO SIDE EFFECTS. Your child will have to be monitored by your local pediatrician for changes and for blood pressure. Propranolol is extremely safe and the least you should worry about.
Also, many people see great changes while using propranolol. It's usually a success, if not a big help.
I'd be more concerned about the steroids. Will she be put on oral steroids or shots? I only have experience with oral steroids (prednisolone/orapred). He was on it for 14 weeks, as well as zantac to counter act the ulcer side effects. Well, my son became immune to zantac and developed awful reflux leading to 2 weeks straight of throwing up, leading to 2 days consisting of 3 seizures (a total nightmare).
The steroids, though, in most kids help.
Unfortunately, for my son, the propranolol didn't help anything long term and neither did the steroids. We are now having it removed this summer as we've been told it is so big, it will probably never involute completely.
Now, this shouldn't discourage you. The drug treatments are normal and help in most patients. My kid was the exception to the rule.
If the doctor is telling you that she has to be admitted to the hospital to have propranolol administered- I would find another doctor. It's an oral med. in liquid form that you can (somewhat) easily give her. Hope this helps.
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Old 04-26-2010, 01:52 PM
mkrzarmomma2 mkrzarmomma2 is offline
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The info came from a pediatric dermatologist in springfield who has worked on over 5,000 childrens hemanigoma. He said that he has had paients who had severe seizure and stroke after the use of Propranolol. I no longer trust my pedi. because ever since dd birth he keeps telling me this spot is a hematoma. Um no. I was wondering about outcomes like yours. I would absoluteky hate surgery, but i hate the fact i would be putting meds into her body over and over again. The steroids would be injections. Which is scary my baby would be on steroids. People who tell me stories like yours push me more toward removal now, because the meds sometimes dont work and she would need plastic surgery in the future anyways. Her dermatologist said that becasue of location, size, and ulceration it would never go away on its on. Am i bad for wanting surgery?
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Old 04-26-2010, 01:54 PM
mkrzarmomma2 mkrzarmomma2 is offline
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And there is no other doctor i can find. Unfortunatley, I am on medicaid and am very lucky that I found someone who would take her at all. Usually he would not accept her but he did due to special need and has now gotten me connected with a pediatric plastic surgeon who would also take her because of special need.
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Old 04-26-2010, 05:17 PM
nadinelk nadinelk is offline
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I would trust the Propranolol a million times more than the steroid treatments and would do the Propranolol first. Again, it is honestly ridiculous to constrain a child to a hospital bed to get propranolol treatments. If given properly and monitored properly, the side effects are minimal.
I would definitely get another opinion. Contact one of the doctors recommended on this website. They are a huge help.
Also, at 5 months, any surgeon would probably be very wary to remove a hemangioma. Surgery should be the last option unless the hemangioma is interfering with her sight/hearing/eating, etc...Our doctor told us he wouldn't even consider doing the surgery until after 18 months, which is when it starts to involute.
Through this whole experience, I've discovered how important it is to get 2nd opinions and do a lot of research.
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  #6  
Old 04-26-2010, 05:50 PM
mkrzarmomma2 mkrzarmomma2 is offline
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I have seen five doctors and a dermatologist. They are giving her the option for surgery because she is in extrememe pain which is interferring with eating. he said if she would have been out of the growth phase, this would not be an option. I think the reason for hospital admittance is because I live five hours from the doctor. He wants to make sure he can watch her. There are no doctors around here who we trust to monitor her either. We are in the process of finding a new pedi because her whole life he has told me she had a hematoma. And then the other doctors did not know either. They said it was infection and nothing to worry about, but it was never infected. One doctor said he thought they needed to scapel it off, thank god i didnt let this happen. Im not trying to not use the drugs, but I really trust her dermatolgist. ( he has worked with over 5,000 children with hemanginoma).is it true they have only been using Propranolol for a little over a year? THat does not seem like long enough for me to let them put it in my baby.
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Old 04-27-2010, 12:05 AM
missy missy is offline
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It is true that they have only been using propranolol FOR BIRTHMARKS for a little over a year (I think the first case I heard about was maybe 18 months ago). But, it is not a new drug.

Honestly, I don't see anything wrong with pushing for removal and I've known children that young that were candidates for removal. If a lesion is interfering with breathing, vision, eating, or is causing pain, it should be treated.

I'm glad you found a doctor you can trust and that you seem to like and that will work with your financial situation also. All of those things are so important. When do you see her new derm again?

Missy
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  #8  
Old 04-27-2010, 05:46 PM
mkrzarmomma2 mkrzarmomma2 is offline
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we meet her pediatric plastic suregeon tomorrow. if he can do the surgery(if the ulcer is too deep), then they will be admitting her to the hospital for what could be a long stay. I know too many children that have missed the window of oppurtunity and have to live thier lives in ridicule. At not yet five months(will be 5/7) the other kids at her daycare call her the disgusting baby. I try hard not to worry about them, but that can cause her sooo many problems down the road. I have no problems with the meds but idk they will work and we will most likely need suregery anyways.

What i say about her condition? I have thought and thought about this since it popped up at three weeks old. I blamed myself of course, but now im over that. God could have created babies with vascular birthmarks normal, but that just would not cut it. He wanted my daughter(and others with VB) to be different and special. Maybe im wrong for wanting her to be normal again, but i just want whats best for her, and she will live a better life without her hemanginoma.
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Old 04-29-2010, 06:18 PM
mkrzarmomma2 mkrzarmomma2 is offline
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Just an update. Zoies ulcerated hemangioma is growing and bleeding daily now. Met with a pediatric plastic surgeon and dermatologist yesterday. They feel that because of size, location, and pain associated with it that surgery is her only option. So on May 10 she will be having surgery to remove it. Kida scary but really excited for it to be gone and for her to stop hurting. The surgery itself take less than an hour and she will get go home that day. The surgeon said he will hide the scar in her neck crease so you wont even be able to tell.
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  #10  
Old 04-30-2010, 09:04 PM
stepmom of 2 stepmom of 2 is offline
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best wishes to you and your baby, please let us know how the surgery goes. i can't imagine hearing my baby being called "disgusting", i can't even imagine how much that must hurt.

big hugs
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