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  #11  
Old 12-02-2011, 09:08 PM
millbrae_mommy millbrae_mommy is offline
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Hi there, wanted to give you all an update from our visit this morning. We got back from the UCSF dermatolgy clininc. We saw Dr. Mathis (really nice doctor) and a few other doctors from the team (the whole team that we saw were really nice.)

Our precious little one is going to get admitted to start proponolol treatment, to get an MRI, to see an opthomologist & Cardiologist, they are doing these checks to check for and hopefully rule out Phace Syndrome. Admission is tomorrow. Drug treatment starts tomorrow as well, low dose. An the rest of test will be done Monday.

Hopefully all goes well. We will keep you updated and put pictures up as soon as we see any changes.

Last edited by millbrae_mommy : 12-02-2011 at 09:15 PM.
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  #12  
Old 12-02-2011, 10:51 PM
missy missy is offline
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Wonderful news! I'm so glad you got to the right place at the right time!

We'll be looking for an update. In the meantime, come back with any questions or concerns or anything you need!

Missy
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  #13  
Old 12-03-2011, 12:53 AM
smurph smurph is offline
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Thanks for the update! Seems like they are really on top of things. Keep us posted!
shannon
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  #14  
Old 12-08-2011, 04:53 AM
millbrae_mommy millbrae_mommy is offline
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Hi...I wanted to update you. Our daughter was admitted to UCSF Children's Hospital on Saturday. While there, she was given a low dose of propranolol .75 mg for 24 hours. She did well on that dose. Her B/P did hover in the lows but it never went too low. Her blood sugars were good, anywhere from 90-104. After the 24 hours, they gave her 1.5 mg. Last dose was 2.25 mg, which is what she got discharged with. She had an MRI with contrast, came back normal. Had cardiac U/S, came back normal. And had an eye exam by an opthomologist, she was diagnosed with Morning Glory and was also diagnosed with PHACE (since she has the hemangiomas and eye abnormality.) She's been on the medication for 4 days and we already see some lightening oh her facial marks. I'll post a pic soon.

Thank you all for such a wonderful site.
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  #15  
Old 12-08-2011, 11:38 AM
missy missy is offline
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That is all such good news! I wish my bp and blood sugar were that good!

Keep us up to date. I'm glad you got such a fast referral, and it sounds like you and your daughter are on the right track now.

And how are YOU? This is all stressful. Hope you are holding up well.

Missy
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  #16  
Old 12-08-2011, 11:07 PM
nickbar nickbar is offline
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I am glad the MRI went well and she is doing well on the Propranolol. I know hearing PHACEs syndrome can be scary... but it sounds like she is in good hands and doing well. What was the prognosis for the eye abnormality?

Corinne
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  #17  
Old 12-09-2011, 03:12 AM
millbrae_mommy millbrae_mommy is offline
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I'm doing ok, much better than before, thank you for asking. My lil' one's eye future is unknown at this time. She has an abnormal eye nerve due to the hemangioma. Her treatment is similiar to my other daughter's eye condition...strabismus. We have to patch her good eye, 1 hour a day. Take her in January to see the eye dr. again and see how it is going. Having had a daughter with strabismus, I don't worry as much about my lil' one's eye too much right now since both are similiar (strabismus and morning glory.) The opthomologist warned us not to go under wikipedia for info on morning glory, she said it is wrong info.
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  #18  
Old 12-09-2011, 12:17 PM
missy missy is offline
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When I was little, they patched my "good" eye for a long time and for most of the day. I still remember how bothersome that was ... LOL ... not to mention that I was blind as well.

It does sound like you're in good hands and have a good treatment plan. Keep us updated!

Missy
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