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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Kinda Irritated (http://birthmark.org/board/showthread.php?t=5404)

HLA76 07-27-2011 12:46 AM

Kinda Irritated
 
So we've been seeing a pediatric derm at Children's Memorial since May for my son's H on his upper lip. She wanted to start with the least invasive treatment, steroid injections directly into his lip. The first injection did absolutely nothing, in fact his H got bigger. The second trip, she said she wanted to double the dosage and if it didn't work we would switch treatments. OK.....Third trip, once again NOTHING!!!! Once again, it got larger. I went in thinking we would be trying something new...NOPE!!!! She decided to try "once more to knock it out". She injected 40cc into his lip on Thursday. Now here I am and seeing no change!!!! The only thing I see is a bruise on his lip that appears to just be getting worse. Is this normal???? If these steroid injections were going to work, when would we see a change??? I'm grateful that his H isn't bad, but I'm also tired of him being stabbed in the lip for something that isn't working.:mad:

abatie 07-27-2011 01:18 AM

I am so sorry about the situation you are facing and although I don't have experience with the specific treatments your child is going through I do have compassion to the frustration. I have been having my own medical frustrations lately so my heart is just aching for you. Would you consider changing doctors or getting a second opinion? I just think you aren't getting the results and obviously you aren't happy. I know that you never know what you will be told but sometimes a fresh face on the case makes a big difference. I had to ask the hospital for someone else when I was recently hospitalized because I wasn't getting better and I didn't have faith in the doctor. I don't regret the decision.

smurph 07-27-2011 02:32 AM

HI there...I feel so bad for what you are going through. My daughter has an upper lip hemangioma too. Her doc never offered a steroid injection but went straight to oral steroids..this was 6 years ago before propanolol was readily used. I'm not sure if either of these medications are an option for you since every hemangioma is different. But I would say if you are not happy with how things are going, it would be good to second opinion at this point.

Shannon

HLA76 07-27-2011 03:16 AM

Thanks ladies!!!! I understand that she is trying to keep him off of daily medication, but it is soooo hard to watch him get a needle jammed in his lip. If she wants to inject him again, I will fight hard to keep it from happening. If I request a second opinion I will probably be waiting longer than his next appointment. At this point I'm just going to ride it out. I know she's a good doctor, I'm just a flustered mommy.

smurph 07-27-2011 10:09 PM

I would have a hard time watching him get the injections too especially when it doesn't seem to be helping. You could always make an appt. for a second opinion in the meantime AND share your concerns with his current doctor at his next appt. too. I am sure she is a great doctor and will be willing to hear your concerns. I'm sure she could understand that you would like to know what plan B is if plan A is not working and when that will happen. Sometimes it's good to get another doctor's opinion because hemangiomas are such tricky things and it may be helpful to hear what someone else has to say too.

I just thought of another option! You could email Dr. Levitin through this website...send him a picture and tell him what's been going on and he'll get back to you with what he thinks. We have done that a couple of times and he has been excellent and it just gives that outside perspective without having to go for that formal second opinion. For me, it helped me to confirm that we were on the right track at a couple of points along our journey.

That's just my thoughts on the matter! Take it or leave it! I could sense your frustration in your first post and I just didn't want you to be too quick to dismiss your concerns because you think you are just being a nervous mommy. Mommy knows best!!! It's ok to trust your intuition and to ask more questions until you feel comfortable with the course of action.

shannon :)

missy 07-27-2011 11:56 PM

Shannon's right.

You can get in touch with Dr. Levitin through http://birthmark.org/experts.php and he will get back to you quickly.

Missy

nickbar 07-30-2011 07:15 PM

I agree with Missy. Time for a second opinion.

mjwrw 08-01-2011 05:53 PM

It is awful to see your little one suffering and not know what to do. I would definitely get a second opinion. When we were looking into treatment options for our daughter four years ago I was able to contact doctors all over the country via email and phone and received multiple opinions that way. I emailed pictures and got great feedback. We found the doctors in thie hemangioma community to be so empathetic and helpful. A second opinion doesn't need to cost anything but your time if you can find helpful doctors. Good luck!!

HLA76 08-03-2011 03:50 PM

So for the last week my son has been chewing on his H (it's on his lip). My husband and I have been trying to stop him and decided to just keep an eye on it until his appointment next week. Well, I looked at it last night and it looks irritated. The best way I can describe it is it looks like a mosquito bite you scratched too much. I called the doctor and left a message first thing this morning and now I play the waiting game. SIGH!!!!!!

nickbar 08-08-2011 09:19 PM

It sounds like it could be ulcerating. Let us know if you get the appt. and how it goes.


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