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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Eyelid H (http://birthmark.org/board/showthread.php?t=2688)

ashesmom 12-18-2007 12:58 PM

Eyelid H
 
1 Attachment(s)
My now 7 week old daughter Ashlyn had what we thought was a black and blue blocked tear duct pop up the day after Thanksgiving. I took her to the ped. the following week when it didn't go away and he said it was definately an H and that we should take her to an opthamologist to see if it was putting pressure on her eye. I still find it odd that one day there was nothing there and the next day there is a lump on her eyelid. The opth. appointment was last Thurs., but he canceled the day before, which of course made me nuts, since we are anxious to find out what he thinks were dealing with. Her new appt. is a few days after Christmas. Her H is only about the width of a dime, and about as puffy as a couple of peas. It seems to be more internal and it really just looks like she has been given a black eye. It hasn't grown a whole lot in the past two weeks, just enough to start covering a small corner of the pupil - we can't wait to get her to the Dr. to make sure it isn't hurting her eye yet. I am glad I found this sight because we didn't realize that these could grow around and behind the eye, and with everything everyone else has posted we really have a great list of questions for the first Dr. we see.
Thanks
ashesmom

jlt71079 12-18-2007 02:41 PM

That is exactly what my sons hemangioma looked like when it started showing up. We also thought it was a blocked teat duct until we went back for his 8 week checkup and it wasn't any better. We were then sent to an pediatric opto. One tip I picked up on here was to take pictures of it next to something consistent like a penny so you can show how it is growing and changing. Bretts continued to grow very fast and I didn't trust that our local doctor knew all there was to know about hemangiomas so we ended up contacting Dr. Fay. Good luck!

Jen



Quote:

Originally Posted by ashesmom (Post 14029)
My now 7 week old daughter Ashlyn had what we thought was a black and blue blocked tear duct pop up the day after Thanksgiving. I took her to the ped. the following week when it didn't go away and he said it was definately an H and that we should take her to an opthamologist to see if it was putting pressure on her eye. I still find it odd that one day there was nothing there and the next day there is a lump on her eyelid. The opth. appointment was last Thurs., but he canceled the day before, which of course made me nuts, since we are anxious to find out what he thinks were dealing with. Her new appt. is a few days after Christmas. Her H is only about the width of a dime, and about as puffy as a couple of peas. It seems to be more internal and it really just looks like she has been given a black eye. It hasn't grown a whole lot in the past two weeks, just enough to start covering a small corner of the pupil - we can't wait to get her to the Dr. to make sure it isn't hurting her eye yet. I am glad I found this sight because we didn't realize that these could grow around and behind the eye, and with everything everyone else has posted we really have a great list of questions for the first Dr. we see.
Thanks
ashesmom


lo1 12-18-2007 08:18 PM

My daughter is 5 1/2 months old and she too has an eyelid H. She had an MRI scan of her brain at 8 weeks old which showed that her H is also behind her eye and slightly pressing on her eye. We have tried steroid injection and oral steroids but nothing is shifting it - apparently its an agressive one. It is a lot bigger than your childs but we are in the UK and they dont believe in doing surgery or less vision is affected more, so we have to 'wait and see'.

Hope you have luck at the DR's.

Lo x

Rachel06 12-20-2007 09:50 PM

My daughter had an eyelid h - a little different than yours, but first off, she is prescious... second, she is lucky to have you out there trying to make sure she gets treatment and seeking out help. We went to NYC to Waner's group and he also can have Faye consult in. Best of the best. Feel free to e-mail me privately if you would like to see photos of my daughter's h. I am happy to share and help in any way I can.
One tip to you - when you start this process, it can seem confusing and overwhelming - find someone you can lean on that will be honest and supportive that has been there, and they will help you through the mess. And then, before you know it - you will be on the other side ready to help others. My daughter is now 2 1/2 and I can tell you I never dreamed we would go through all we did - and feel so normal and finished like we do now.
Happy holidays and please feel free to contact me if I can help in any way.

Sherri
sherrirfoster@sbcglobal.net

cweesmith 03-16-2008 06:06 PM

My daughter was diagnosed the same way, same age. We and the pedi. thought it was a blocked tear duct, but I made an appt. w/ a pedi.opthm. regardless who immediately thought it was a hemangioma. By MRI it was 2 cm at it's longest length, and located at the inner corner near her nose and actually was deep enough to go back behind her eyeball some too. She had slight lateral displacement of the eyeball but after 2 specialists eval, thought her vision was not compromised. With the location being so deep, it was felt that she was not a good candidate for injectable steroids. So at 8 weeks we embarked on oral steroids. In the scheme of things, I consider us fortunate. The only side effect being some reflux which has been easily treated with Zantac. Oh, and the weight gain, but it hasn't been too severe and that is just temporary. She is now 5 1/2 months old and from my visual assessment looks great. We have been slowly tapering down the steroid dose over the past few months and will finish in May. We pray for no rebound growth now.

Recommendations:
Always follow your gut. If you feel like something is wrong, call the doctor.

Get an opinion from a H specialist. Often a dermatologist and a opthamologist team will treat and monitor together (steriods). Find a Hemangioma Clinic for an opinion.

If she gets put on oral steroids, ask for reflux medication. And...remember that it's dosed on weight so as she grows, you might need to have the doc increase the relux med. dose.

In our experience with this deep orbital H, response is measured mostly by YOU. Of course the doctor makes an assessment too, but your reports are a large part of it. So like someone else said, take weekly pics with a standard object like a coin for comparison. It's been a great tool for us to see her response to treatment.

Keep a notebook of important events....questions you asked and answers, doctor recommendations, etc. Believe me, you'll get home and think..."what did he say about that?" Also, I printed out a calendar and made notes on it solely about her med doses and doctor appts.

Educate people about her need for extra cleanliness while on high dose steroids. Encourage hand washing and keep her away from sick people.

I know we are lucky, it could be worse. That is why I wanted to share. When you strat this journey it can be very scary...for many reasons. Don't lose hope...it will get better. Some of us have tougher roads than others. You can have the same age baby, same size and type H, same location, but widely different roads. But remember there are good case scenarios too, not just bad ones. Keep faith.

I was very scared when she was first diagnosed, and this board helped me. It also helped seeing pics of other kids progress. It also prepared me. If you are interested please e-mail me privately. eebaughman@yahoo.com

Beth
Houston, TX

EJsMommy 03-17-2008 02:21 PM

Tearduct
 
Hi,

I am wondering about the H's near the eye and it's relation to the tear duct.

Did you find that the eye that was affected watered a whole lot?

My daughter's H is above her right eye, and her right eye leaks ALL the time. It's constantly tearing. I wonder if this is a coincidence, or if it has to do with the location of the H. I don't know if she should get an MRI. My daughter's doctors are not proactive in any way towards this Hemangioma:(

sarabr12 03-26-2008 03:50 AM

Hello. I have just found this site. My daughter is 8 months now and her's too is on her eye, but on the bottom. Her eye waters alot also. My question is what kind of doctor do we see? We have already been to a derm and opth. They both said to leave it alone, but we feel it's interferring with her eye.

ashesmom 03-26-2008 11:16 PM

Sarabr12,
We saw two differnt pediatric opth. also. one said to leave it alone and the other wanted to do steroid injections. From the great experience we had I would recommended sending and email to Dr. Fay with a photo. He is on the contact an expert page. He would get back to you rather quickly, I don't know if you live near Boston, but for us every penny we have spent has been well worth it. Good luck!
Ashesmom

ashesmom 03-26-2008 11:18 PM

Sarabr12,
We saw two differnt pediatric opth. also. one said to leave it alone and the other wanted to do steroid injections. We could have gone with the injections but with no guarentee for success we opted with surgery. From the great experience we had I would recommended sending and email to Dr. Fay with a photo. He is on the contact an expert page. He would get back to you rather quickly, I don't know if you live near Boston, we don't, but for us every penny we have spent has been well worth it. Good luck!
Ashesmom

Rachel06 03-28-2008 03:13 AM

Sarabr12 - I am happy to help you get some answers quickly - if you would like to chat - feel free to e-mail me privately sherrirfoster@sbcglobal.net. I wish you well in your search for help for your child.
Sherri


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