High dose of Propranolol to cause H to ulcerate? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 07-09-2013, 01:29 PM
missy missy is offline
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Thanks for the update! I'm glad he's not too cranky. And I'm glad you feel he's doing better overall. It's hard to worry and, as a parent, not be able to make your child better RIGHT NOW. Hang in there!

I will see if I can get in touch with Chloe's parents. Perhaps Dr. Nagy's office would contact them on your behalf? I know they wouldn't give out someone's contact information, but they might pass on yours. I will if I can find them.

Let us know how Thursday goes!

Missy
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  #12  
Old 07-12-2013, 03:58 AM
kg8183 kg8183 is offline
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Default Update!!!! Saw a Hemangioma Specialist

Today we took our son to see Dr. Mark Nagy who is on the specialists list on VBF and NOVA. He is a respected pediatric ENT who specializes in Hemangiomas and vascular malformations. In fact, he completed a fellowship with Dr. Milton Waner, which says a lot.
He seemed to be a really nice and patient person, since we probabely took longer than most patients. It is great that he is an ENT since parts of our son's hemangioma are on the ear flap and behind the ear and hemangioma has partially closed the ear canal, so he will keep an eye on this. He took the time to check the ears as well and cleaned the canal, because there was so much gunk from the use of vaseline.
Dr. Nagy confirmed as well that propranolol will not cause ulceration, and that it is likely caused by hemangioma growing and ripping the skin, so to speak. He suggested that we immediately increase the dose to the previous dose, which was 0.7 ml taken three times a day. I did mention that when he was prescribed 2.1 ml per day, which was essentially 2mg/kg/d, he weighted less. But I was told to stick to 2.1 ml for now and see what happens.
He also wants to do laser pulse therapy to take some of the red away and flatted the hemangioma. We are going to see him next Tuesday at which time he will most likely do the laser depending how the hemangioma will look after taking the full dose for about 5 days.
We were also told that if propranolol and laser do not do the trick, he will do steroid injections. To be honest, my wife and I are concerned about using steroids, but we didn't really bring it up because we think that the propranolol and laser will be sufficient. After all, in the 14 days that he took propranolol the hemangioma did lighten up significantly in color, flattened and contracted a bit as well. So will see what happens.
Instead of MetroGel (Metronidazole), we were prescribed to use Mupirocin 2% cream (same as Bactroban) twice a day. I think because of the location of the hemangioma, he told us not to use vaseline (some does get into the ear canal), because he seemed to be concerned with water/dirt being traped in the canal because of vaseline. My only concern with not using vaseline was the probability that we may not be able to keep the ulcer moist at all times. We were told that we can use the cream 3 times a day if this becomes an issue.
For pain management, again, we were told not to use Lidocaine, which we haven't used for 5 days now, and continue using Tylenol.
If not already clear , my wife and I are pretty satisfied at this point. My only concerns at this point are trying to keep the ulcer moist without vaseline so that it heals and that propranolol and laser will stop the growth and flatten the hemangioma, so that we do not have to do steroids.
By the way, are there water-based ointments that one can put on an ulcer to keep it moist? Also, what experience do you have with laser dye pulse therapy? Has it helped in your case?

Last edited by kg8183 : 07-12-2013 at 04:32 AM.
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  #13  
Old 07-12-2013, 05:07 AM
kg8183 kg8183 is offline
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By the way, I am attaching some photos taken 3 days before the start of the propranolol treatment and 14 days after the propranolol treatment with the ulceration, at which point we were instructed to stop giving him the medicine.Pic10-ulcer-14days into Prop. treatment-78days old-crop.JPG

Last edited by kg8183 : 07-12-2013 at 05:13 AM.
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  #14  
Old 07-13-2013, 03:08 AM
smurph smurph is online now
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Ouch! I can see why he has been crying so much! It looks so sore! I am so happy that you have found your way to Dr. Nagy and that you are feeling more comfortable about the treatment plan. That is really interesting about the lidocaine...I am really curious about that because we were told to use it so much on my daughter's lip...yikes! I hope we didn't cause her any harm!!! But I guess that's water under the bridge now! My daughter did have 2 laser treatments and she did very well with it. It was very helpful. Good luck with everything and thanks for the update! Keep us posted about how it goes on Tuesday!
Shannon
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  #15  
Old 07-13-2013, 04:04 AM
kg8183 kg8183 is offline
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Thanks Shannon. I have read about your daughter's hemangioma, and probably, in cases like hers, Lidocaine may be the only option. Tylenol seems to be helping our son, and I would think that if things get worse, we may have no other choice but to use Lidocaine.
We are very much looking forward to Tuesday. Well, with the exception of our son. The poor kid gets so worked up and terrified when they start doing things on him. Sometimes I think that the loud crying is partially because of all the stress and anxiety.
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  #16  
Old 07-13-2013, 03:29 PM
missy missy is offline
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Thank you so much for the update. We, too, will be looking forward to Tuesday and what happens. Please don't forget to come back and let us know!

Poor tyke... I feel bad for him.

Missy
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  #17  
Old 07-17-2013, 04:49 AM
kg8183 kg8183 is offline
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Default Update. Had a laser treatment today.

Our son had laser pulse dye therapy on his hemangioma today. We were not allowed to go in, but were told by the dr. that he took it pretty well. The doctor is satisfied with how the treatment is progressing and he thinks that Propranolol with laser will be sufficient.
At this point the area is slightly swollen and we were told that it may become more swollen. We do see the black spots left from the laser beam and the color of the hemangioma is darker.
We were instructed to apply Mupirocin (Bactroba) to the entire Hemangioma today and tomorrow, and continue applying it to the ulcerated area and any scabby and/or peeling area after that. We were told that it will take weeks to see the results of the laser treatment, so we'll wait and see.
It would be interesting to learn what experience others had after laser treatment. Did you have any complications? What happened to those black spots? How did Hemangioma/ulcer respond to the treatment? Did you experience any additional scabbing/peeling/ulceration after the laser treatment? Did you apply any creams on the Hemangioma to prevent scabbing/peeling after the laser treatment?
Thank you in advance
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  #18  
Old 07-17-2013, 01:58 PM
missy missy is offline
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Hi!

I can't answer any of those questions, but I'm glad you seem to have had a good experience. Were you pleased with Dr. Nagy?

How's your son feeling? Is he less cranky yet?

Keep letting us know what's going on with you guys!

Missy
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  #19  
Old 07-17-2013, 06:19 PM
smurph smurph is online now
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Hi! I can tell you what our experience was with the laser- it may be different though because we were at a different stage when Faith had her laser done. She had it done at age 6 and age 8 to just touch up some of the remaining color. There were no ulcerations involved. She tolerated the procedure well. The first time she had anesthesia by my choice but they thought she could probably go without. So the second time, she had no anesthesia but they put some cream on that numbed the area and it had to stay on for about an hour or so before hand. I was in with her while she had the procedure done and I could see that she did well with it...there were a couple of sensitive spots I could tell, but even with that she was ok. So I'm sure that your son probably did fine. My daughter's hemangioma immediately bruised-dark, dark, purple and stayed that way for longer than I expected. I would say it took about a week for it to start to fade and then about another week for it to totally fade. I didn't realize it would take that long initially. She had a little bit of swelling but not much. I think we gave tylenol for a day maybe. She did not really complain of any pain at all. We also had to put bacitracin ointment while it was healing and make sure we put sunscreen on it (this was very important! And hers was done in February, so I'm thinking that would be even more important this time of year) Her second procedure was not as significant as her first and everything was milder. It did take us a few weeks to see the results. We did not have any scabbing or peeling. I'm guessing that your son's might be more extreme based on the pictures you showed and the ulceration. Also, your son's hemangioma is still in the growth stage and my daughter's had pretty much finished involuting. So maybe some other people will chime in on here with experiences with laser/propanolol during the early months. Hopefully, this will really help with that ulceration and that will make your lives a whole lot easier. Thanks for the update!!! Looking forward to hearing about the results.
Shannon
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  #20  
Old 07-18-2013, 04:21 AM
smurph smurph is online now
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I can't remember if I already shared this with you so please forgive me if this is a repeat. Here's some pics of Faith's hemangiom...if you go towards the end of the album you can see pictures of when she had her first laser treatment. It shows a timeline of how long it took for hers to fade.

https://www.facebook.com/shannon.hoh...02383&t ype=3

It might just give you one example of the progression of how things could go.
Shannon
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