Ulcer pain - Help!

Blue · #1 01-17-2009, 01:44 AM

My daughter (5 months) has an ulcerating hemangioma on her leg. We took her to our local vascular anomalies clinic and they are having us treat her with a dressing and topical antibiotic. When we first went in, the ulceration was dark (like a scab) and didn't hurt her. Now after 4 weeks of dressings, the H is excruciatingly painful for her every time we change it. She gives us this look like "how could you betray me and do this to me" turns bright red and bursts into tears, and I feel just horrible.

Even worse, she has really started to favor her other leg--this is impeding her doing her developmental things--she won't roll over any more because her leg hurts her and she won't put weight on the leg with the H.

Is there a way to stop her from being in so much pain? They said to give her ibuprofen, but I don't think it's helping. And if anyone else has had a similar experience where their child didn't a) stop trusting them or b) have problems crawling/walking afterwards, I'd find it very reassuring.

nickbar · #2 01-18-2009, 03:01 AM

Email Dr. Serena (from ask the expert).

THe only thing that healed my son's ulcer on his ear was laser. It healed, no more pain.

Please email me if you have any questions. She should not have to suffer.

jgoodman0814 · #3 01-19-2009, 12:58 PM

i agree with Corinne, laser is wonderful and wish i had know about it with my daughters first ulceration. we were given a topical numbing cream for the next one that showed up to help with the pain until our appointment for the laser. its called litacain. check to see if thats something that they can give you. its wonderful! you put it on before any dressings or ointments and it numbs the area. as far as her developmental, her hemotolgist kept telling me that she didnt think that her having this huge h that was ulcerated on her right arm would affect her in any way. we had a program called first steps evaluate her and the ended up giving her sessions to help her developmentally for several months. alos, this may not have anything to do with the ulceration, but shes left handed now and the h was on her right arm. you can see her story and photos below.

skrwolf · #4 01-24-2009, 04:18 AM

My 9 month old daughter had a hemangioma on her upper back. We have been dealing with ulcerations for MONTHS. We were to the point that the hemangioma was measuring 6 cm by 6 cm and the ulceration was 5.5 cm by 5.5 cm. The whole thing was ulcerated. We finally just had hers excised on Wednesday. The best decision that we ever made!! We had tried every dressing, ointment, pulse dye laser, everything... The pain was affecting our daughter developmentally as well.

Some of the things that we found that helped in the meantime... We were always advised to keep the ulceration covered and moist. We kept something on it at all times, even during bathtime (usually a clear tegaderm over whatever other dressing/ointment we were using at the time).

Our routine was to do dressing changes after her bath. One thing that I found that helped was lidocaine (as previously mentioned). I would put a thin layer of lidocaine on the ulceration and then bathe my daughter. I let her sit and play in the tub for 15 minutes or so while the lidocaine worked. This does numb the area really well.

Some of the ointments that we tried were: silvadene, Regranex, Biafene, Bacitracin. Although they didn't work for us, I have read of other people having great success with them.

Pulse dye laser is another option that some have success with. It is very expensive if you insurance doesn't cover it.

One thing that you really want to watch for is infection. We always knew if the ulceration was infected when it started smelling bad. My daughter had staph 3 times, e. coli, and pseudomas.

Don't give up... I would be more than happy to share our experiences. I have done a ton of research on ulcerations and my daughter went to a great wound care clinic for 3 months. Be persistent... The longer that it is ulcerated, the more chance it has of becoming infected and the ulceration growing larger. Children are resilient.

Good luck!!

Shelly
skrwolf@hotmail.com

emilysmom · #5 02-04-2009, 08:48 PM

my daughter is five months and has a hemangioma on her forearm and on her wrist to her hand..it has many ulcerations and she's had 4 lazer surgeries. her doctors have her use a bandage called mepilex which is silicone based and keeps moisture in so when it does scab up it doesn't pull at her skin.for pain they say to use tylenol but it doesn't always help so they perscribed her lidocaine which for the most part is a big help but no matter what she screams and kicks when we change it..and developmentally she's having trouble crawling cause she doesn't want to extend her arm..but i would ask the doctor for lidocaine.

laurat · #6 02-06-2009, 03:37 PM

hi, my daughter is 4 months old and has an ecoli infection on a H on her scalp. she has had 2 courses of antibiotics back to back and they have not worked. anyone who has experienced this if you can give me some idea of how long this could take to clear i would appreciate it as it is driving us both crazy!!! also using mepilex and mepitel dressings with a peroxide cream but they also seem to be proving useless in clearing it up!