High dose of Propranolol to cause H to ulcerate? - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-05-2013, 05:00 AM
kg8183 kg8183 is offline
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Default High dose of Propranolol to cause H to ulcerate?

Unfortunately our son's Hemangioma near his ear ulcerated, regardless of how moist we tried to keep it using vaseline. We contacted the dermatologist and were right away instructed to decrease the dose of Propranolol from 0.7 ml every 8 hours to 0.5 ml, which means he is now at about 1.43 mg/kg/d rather than the 2 mg/kg/d before. We were explained that the high dose of Propranolol can cause the Hemangioma to ulcerate (really?). In addition, she put an order of 5% Lidocaine (xylocaine) ointment, which we are supposed to use about 4 times a day. We were also instructed to give our son Tylenol if needed. And lastly, we were told to continue applying vaseline on the Hemangioma and the ulcerated part to prevent more ulcerations and help the already ulcerated part to heal. We are supposed to see the dermatologist on Monday at which time she will start treating the ulceration with some steroidal creams.
I do have some questions if you guys don't mind.

1) Can high dose of propranolol cause hemangioma to ulcerate? And is reducing the dose a usual method for dealing with this?
2) I haven't been able to do much research about ulcerations complicating H treatment with Propranalol. Can you shed any light on the matter? Perhaps provide some links.
3) How much of Lidocaine ointment are you supposed to apply at one time and what do you use to apply it? My son is 2.5 months and weighs 10lbs 13 oz and I don't want to put too much on it (I asked the dermatologist and the pharmacist, but really didn't get the answer I wanted, i.e. thin or thick later, etc.). I tried doing it with a q-tip but this ointment is pretty hard and I am not sure how much is really being applied. Plus my son screaming when I touch it doesn't help the matter.
4) Will applying Vaseline on the ulcerated part help with healing?
5) Have you used Baby Tylenol while on Propranolol and maybe Lidocaine (xylocaine) in addition to it?
6) What is your take on treating the ulceration with steroidal creams?
7) Any advice on preventing ulcerations from happening?

Sorry that I am bombarding you with questions. My wife and I have to deal with this for the next 3 days before we see the dermatologist

thanks in advance

Last edited by kg8183 : 07-05-2013 at 05:06 AM.
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Old 07-05-2013, 01:39 PM
missy missy is offline
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Hi there!

So sorry this happened. What a shame.

First, we have some instruction on this:

http://birthmark.org/pdf/UlcerCareInstructions.pdf

Write in to Dr. Levitin via http://birthmark.org/experts.php He will be able to answer your questions better than anyone else right now. He's usually very responsive, but it is a holiday weekend, so I don't know if he's working.

Missy
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Old 07-06-2013, 12:50 AM
jennr11 jennr11 is offline
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So sorry to hear all this and I don't have a ton of answers for you. It does sound like your dermatologist is pretty on top of it, which is a great start! Propranolol helped to stop the growth and heal our daughters ulcerations last year. I've read if the H involutes too quickly it can ulcerate, but I wouldn't think that would already be the issue you're having??? We were never given the option of Lidocaine for treatment and had to "tuff it out" with the pain. As a parent it is honestly one of the most helpless feelings I've ever had. At the time, our dermatologist had us use Aquaphor on it. It is a bit easier to spread, but we were also able to keep it covered so it wasn't coming off on everything (her H is on her wrist). We did use Tylenol and Propranolol at the same time. We never had any problems with the Propranolol the entire time she was on it (from 10 wks old to 11 months old). She is now 16 months old and started laser treatment one month ago.
I second emailing Dr. Levitin. He's currently treating our daughter and he's great! Super helpful and very quick to respond when you need him. Good luck!
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Old 07-06-2013, 11:28 PM
smurph smurph is offline
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Hi there!
My daughter had an ulcerated hemangioma on her lip and if I remember correctly I put a fairly thin layer of xylocane on it (mostly because it was on her lip.) We put enough to cover it fully but not a glob. We were more liberal with the aquaphor which we also had to put on it. I can't remember if we used tylenol too....but my daughter wasn't on propanolol, she was on oral steroids.
I have not heard too much about propanolol causing ulcerations but that's not to say that it can't happen. It is still relatively new in terms of being used to treat hemangiomas and I think they are still researching some of its side effects, etc. That might be why it is difficult to find a lot of info about it out there right now.

I would second Missy's suggestion to look at the ulcer care instructions that she shared with you. I know how awful it is to have a baby with a raging ulceration. My daughter was screaming and crying in pain, it seemed like all day long. It was terrible. We found the xylocane to be very helpful while it healed. Do you notice it helping with the pain?

Hopefully you will have some luck getting in touch with Dr. Levitin! Hang in there!
Shannon
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Old 07-07-2013, 07:48 PM
kg8183 kg8183 is offline
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Thank you everyone.

I did contact Dr. Levitin with my concerns and received very prompt responses. Considering that it is also the 4th of July week-end, it was very nice of him to take the time to provide his opinion. It is amazing and very tough for me as a parent, but what he said regarding the propranolol and the ulceration treatment pretty much contradicts what we were told by our dermatologist. I will not go into to much detail....

As of yesterday, we were instructed by our dermatologist to completely stop propranolol for 2 days before we see her on Monday after she learnt that the ulcerated area has increased a tiny bit. So since yesterday our son hasn't had propranolol and will miss about 6 doses in two days until MOnday. Which is apparently a big no no.

I guess we'll go in tomorrow for the appointment, but I really need to contact Dr. Mark Nagy or Dr. Linda Brodsky in Buffalo who specialize in Hemangiomas.

Thanks again
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Old 07-07-2013, 08:04 PM
kg8183 kg8183 is offline
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Quote:
Originally Posted by smurph View Post
Hi there!
My daughter had an ulcerated hemangioma on her lip and if I remember correctly I put a fairly thin layer of xylocane on it (mostly because it was on her lip.) We put enough to cover it fully but not a glob. We were more liberal with the aquaphor which we also had to put on it. I can't remember if we used tylenol too....but my daughter wasn't on propanolol, she was on oral steroids.
I have not heard too much about propanolol causing ulcerations but that's not to say that it can't happen. It is still relatively new in terms of being used to treat hemangiomas and I think they are still researching some of its side effects, etc. That might be why it is difficult to find a lot of info about it out there right now.

I would second Missy's suggestion to look at the ulcer care instructions that she shared with you. I know how awful it is to have a baby with a raging ulceration. My daughter was screaming and crying in pain, it seemed like all day long. It was terrible. We found the xylocane to be very helpful while it healed. Do you notice it helping with the pain?

Hopefully you will have some luck getting in touch with Dr. Levitin! Hang in there!
Shannon
We used xylocane couple of times and it did help somewhat. However, we were adviced not to use it for now because with an open wound we can't control absorption. So we are left with Tylenol at this point.
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Old 07-07-2013, 09:04 PM
kg8183 kg8183 is offline
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Quote:
Originally Posted by missy View Post
Hi there!

So sorry this happened. What a shame.

First, we have some instruction on this:

http://birthmark.org/pdf/UlcerCareInstructions.pdf

Write in to Dr. Levitin via http://birthmark.org/experts.php He will be able to answer your questions better than anyone else right now. He's usually very responsive, but it is a holiday weekend, so I don't know if he's working.

Missy
Thaks for the link for caring ulcerations. By the way, how often are you supposed to wash the wound and change the gauze?
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Old 07-08-2013, 02:29 AM
smurph smurph is offline
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Hi there....it is very frustrating to get contradicting information. Unfortunately, it happens often enough with hemangiomas. It happened to us too 8 years ago and it was one of the most challenging parts of our experience. So I am surprised/and not surprised to hear about the xylocane information. sigh- that's so frustrating because it was a lifesaver for us.
Dr. Levitin is one of the leading experts in the field so hopefully he has given you some helpful information to guide you and some questions to ask as you go into your appt. tomorrow, esp. with regards to stopping the propanolol. As for the frequency of cleaning the wound and changing the gauze, it probably has to do with the severity of the ulceration, so I would ask about that at your appt. tomorrow. If you do call the doctors in Buffalo, be sure to tell them that your son has had some complications with a really painful ulceration and that should help to get a quicker appt. Let us know how your appt. goes tomorrow. I'll be thinking of you. Hang in there.

Shannon
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Old 07-08-2013, 03:09 AM
kg8183 kg8183 is offline
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Quote:
Originally Posted by smurph View Post
Hi there....it is very frustrating to get contradicting information. Unfortunately, it happens often enough with hemangiomas. It happened to us too 8 years ago and it was one of the most challenging parts of our experience. So I am surprised/and not surprised to hear about the xylocane information. sigh- that's so frustrating because it was a lifesaver for us.
Dr. Levitin is one of the leading experts in the field so hopefully he has given you some helpful information to guide you and some questions to ask as you go into your appt. tomorrow, esp. with regards to stopping the propanolol. As for the frequency of cleaning the wound and changing the gauze, it probably has to do with the severity of the ulceration, so I would ask about that at your appt. tomorrow. If you do call the doctors in Buffalo, be sure to tell them that your son has had some complications with a really painful ulceration and that should help to get a quicker appt. Let us know how your appt. goes tomorrow. I'll be thinking of you. Hang in there.

Shannon
Thank you Shannon. Indeed, Dr. Levitin was very helpful. If it wasn't for the ~ 6 hour drive or 1.5 hr. flight, which our son probably will not take well now, we would pack and go down to NYC to see him in a heartbeat. I'll keep you posted.
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Old 07-09-2013, 02:12 AM
kg8183 kg8183 is offline
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Well, we took our son to see the dermatologist today since it has been 2 weeks since he started the Propranolol treatment. We were told that the ulceration looks ok and it doesn't seem to be infected. Nevertheless, we were prescribed Metronidazole (same as Metrogel) to apply twice daily to the wound just in case. We were also instructed to apply good amount of vaseline to the ulcerated area ever 4 hours or so. We were strongly advised against washing the area as per VBF wound treatment instructions when I asked about a prescription for sterile water (the over-the-counter saline solution just didn't work and I hate sterilizing water because it takes so long and I still question myself if it is really sterile). So we were not given a prescription for this and were told to just let water drip over it during baths and that will be enough. And lastly, we were told to continue with the Lidocaine (we'll see about that).
We were instructed to start taking Propranolol again at 1mg/kg/d and in couple days increase it to ~1.4/mg/kg/d but not more than that (he was at 2mg/kg/d before). She kept insisting that Propranolol will cause ulcerations at higher dose and at lower doses (1-1.5) will actually help to heal. However, at lower doses, especially at 1mg/kg/d, it will be difficult to stop the growth of the hemangioma (sort of like catch 22). Actually, since our son starting taking lower dose for one day and didn't take any the following two days, the hemangioma has rebounded. It has gotten more red and elevated.

Anyways, I did call Dr. Mark Nagy's office today who is listed on this website and is located in Buffalo and was able to get an appointment for this coming Thursday. By the way, I read the story of Chloe Simone Grant on this website, whose operating doctor was Dr. Nagy. Can you please tell me if the parents are active on this website? I'd really like to get in touch with them and see what they have to say. By the way any experience/information regarding Dr. Nagy will be very appreciated (you can send a pm or reply to the post).
Overall, my son is doing much better. I think my wife and I are getting the hang of it. Attending the wound has not been as stressful, thankfully, (I hope we are doing it right), and he has not been too cranky.

Take care. I'll keep you posted.
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