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-   -   ulcerated lip hemangioma (http://birthmark.org/board/showthread.php?t=2720)

patz29 01-05-2008 01:10 AM

ulcerated lip hemangioma
 
Hi.. I'm new here, just wondering if anyone has advice... My 9 week old daughter has had a hemangioma on her lower lip/chin and one near her ear since 2 weeks.. After about 5 weeks it has been getting worse and the one on her lip ulcerated the other day in one small area.. We have been seeing a hematologist that specializes in hemangiomas, and he started her on oral steroids... Do they usually work to either heal the ulcer or shrink the hemangioma? How long does it usually take? Also worried about side effects.. Its all not too bad right now, but really hoping that it dosn't get any worse. I was going to keep putting vasoline on to keep it from cracking/getting too dry... Dr said that if it gets worse we could look into laser treatment - any info on that? Just not sure how much better it is to be aggressive w/ treating it, or just wait and see. So far she seems to be eating ok, I am breastfeeding but just went back to work so she will be getting more bottles.. Are there any specific bottles that may be better for this? I am using breastflow now and it dosn't seem to be bothering her too much...
I'm interested in hearing any advice or suggestions... thanks!!!
Lynn

madison'smom 01-05-2008 04:13 AM

Hi,
My daughter is now 9 months old and has a hemangioma that extends from below her eye across part of her nose down to her upper lip. Her lip also ulcerated at about that age. She has not had any steroid treatment. We took her in and did a laser treatment on her lip when it ulcerated. It is a pretty quick and easy process. It takes about 1 second they just zap it really quick it is supposed to help heal the ulcers. We had to go two times because it didn't heal right away and it was causing her a lot of pain and she wasn't eating well. Keeping vasoline on it is a good idea. I would just try to find the softest nipple you can... I don't know my daughter never took a bottle. Well good luck!
Stacey

mmarrari 01-05-2008 12:26 PM

Hi,
My daughters hemangioma never ulcerated luckily, but it is my understanding that vaseline is not a good idea. There are other products used on ulcers that work better, like Aquafor, but hopefully someone with more experience will chime in on that.
Laser is used to help heal ulcers and I know it has good results. Steroids don't help with ulcers, as far as I know, and mainly stop the growth of the hmangioma, although in some cases might also reduce size somewhat. My daughter was on oral steroids for 9 months and her hemangioma shrunk a lot. However she was on very high doses for a long time, which is not usual. I think she was on 4 mg/kg for a few months (started at 3 months old and 6kg at the time so 24 mgs a day) and then a VERY slow weaning process which ended at 12 months old. The side effects can be hard to handle but every child is different and yours might not experience any... In our case her sleeping was a mess, she had high blood pressure, swelling of the body and some tummy problems. She was back to herself about a month after weaning and is now sleeping 10 hs straight (yeahhhh). Good luck and I hope you find all the answers you need!
Marina and Valentina

quinnysmom 01-05-2008 03:32 PM

Lynn

My son Quinn had a very severe lip ulceration. I am so sorry to hear your little one is going through this as they are very painful. My son's case was severe but hopefully I can give you some advice.

Quinn lost a lot of lip tissue from using a bottle (before he was diagnosed properly we were told he had port wine) Each time he would feed the tissue would get stuck to the bottle. After awhile it was to painful for him to eat. He ended up with an NG tube to feed so that his lip woulod have a chance to heal.

There is a special type of bottle that you might find very useful called the Haberman bottle, commonly used for cleft lip and palate. It enables the child to be fed from an area of the mouth that is not affected. This helped my son greatly and enabled his lip to heal.

When Quinn was put on steroids his lip began to heal quickly which was a blessing considereing how bad it was. his doctors do believe that the steroids enabled his lip to heal so quickly but this is not always the case as some children require laser to stop an ulcer. We had an appointment for laser set up but the steroids helped heal his lip so we cancelled it.

Ulcerations can cause scarring and keeping it moist with Aquaphor or vaseline (we used vaseline as Aquaphor wasn't available in Canada) the big thing is to avoid as much friction as you can and keep it moist 24 hours a deal to promote healing and help minimize scarring when it does heal.

If you need anything else please let me know. My email is

all 4 quinny @hotmail.com (without spaces)

Jen Duncan
Mom to Quinn 20 Months PHACES,Segmental,Compound,Internal and Intra-Cranial Hemangiomas

yoopertroll 01-05-2008 09:18 PM

2 Attachment(s)
My daughter's bottom lip ulcerated at 5 days and by 3 weeks 2/3's of her lip was gone. We ended up using oral steroids and Regranex Gel and between the 2 her lip healed. She has some major damage to her lip as the ulcer went below her lipline. She has a permanent crack in her lip which will need to be fixed eventually. I breastfed her even though it was painful for both of us. Once she was latched on she was okay. I made sure that I put aquaphor on her lip before she nursed so the tissue would not stick to me. It was less painful for her to nurse than to use a bottle. If her lip had not heal as quickly as it did I probably would have gotten one of the haberman bottles.

patz29 01-06-2008 10:20 AM

Thanks for all of your responses - Its nice to have support from people who know what we are going through!
Lynn

Taryn9_25_07 01-17-2008 08:07 PM

Same Problem
 
My daughter Taryn is almost 4 months old. She has a hemangioma on the lower left side of her lip. It ulcerated about 5 weeks ago. We went to a dermatologist who had us start with Regranex Gel every evening. That appears to have helped the ucler but her lip still has a pretty decent size whole in it. Last Thursday she stopped taking a bottle again and it appears to be hurting more. We went back to the dermatologist yesterday and we started on oral cortisone . I also order the bottle that you mentioned to see if that will help. I am back at work and having to go to daycare twice a day to feed her. Any suggestions on how to get her to keep the cortisone down? Today she spit the majority of it out. Also what is the difference between getting the shot or giving it to her orally?

patz29 01-17-2008 10:52 PM

getting better
 
Allie has been on the prednisolone for 2 weeks now and her lip is looking much better.. I've been giving her that with a syringe and she has been taking it well..She just kind of sucks it out of the syringe. I also have been putting the aquaphor on as many people have suggested... It is looking better now and the dr had us decrease the dose of steroid today, I guess it will be a slow wean.. I am not sure what the difference is between the injections and oral - our dr didn't even mention injections...
Lynn

Taryn9_25_07 01-18-2008 04:52 PM

I tried to give Taryn the cortisone again this morning and I am not sure that she is getting much down. She spits the majority of it out. People have recommended giving it to her in a bottle but that won't work because a bottle hurt her lip and she won't take it. I am suppose to be giving her a teaspoon and i don't think she even took half of it this morning. I am hoping she starts taking it better everyday but as of today it is not looking very promising.

patz29 01-19-2008 12:25 AM

Sorry to hear you are having so much trouble getting her to take the meds...
Here is a link w/ some suggestions:
http://www.babycenter.com/0_giving-m...ively_11401.bc
basically says to use a syringe and put it in her cheek, also talks about asking the pharmacist for a flavor mix in if you think its the flavor she dosn't like..
Good Luck!


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