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Search: Posts Made By: missy
Forum: Help and Resources for Hemangiomas 07-09-2015, 04:25 AM
Replies: 5
Views: 6
Posted By missy
I was wondering what happened? You guys were on...

I was wondering what happened? You guys were on my mind.

Missy
Forum: Port Wine Stain Help and Resources 07-03-2015, 06:08 AM
Replies: 2
Views: 3
Posted By missy
Hi and welcome! http://birthmark.org/node/352. ...

Hi and welcome!

http://birthmark.org/node/352. This is what we have right now on that topic.

Good luck!

Missy
Forum: Help and Resources for Hemangiomas 06-27-2015, 04:38 PM
Replies: 4
Views: 5
Posted By missy
Frankly, I'm always amazed and humbled at the...

Frankly, I'm always amazed and humbled at the time and attention given to this by the physicians.

Ask the Expert is free. After you submit your question, it will give you a prompt to make a...
Forum: Help and Resources for Hemangiomas 06-27-2015, 04:34 PM
Replies: 5
Views: 6
Posted By missy
Yes, this is why I didn't want you to go to the...

Yes, this is why I didn't want you to go to the wikipedia page! It's alarming.

Rather than a neurological specialist, right now you need a solid diagnosis. We used to have a listing for Dr. Lord...
Forum: Help and Resources for Hemangiomas 06-26-2015, 04:20 PM
Replies: 4
Views: 5
Posted By missy
Hi and welcome! My best advice is for you to...

Hi and welcome!

My best advice is for you to call her physician and schedule an appointment. The only time I've ever heard of rebound growth is when a child was on propanalol and, when the medicine...
Forum: Help and Resources for Hemangiomas 06-26-2015, 04:01 PM
Replies: 5
Views: 6
Posted By missy
Hi and welcome, So many doctors still use the...

Hi and welcome,

So many doctors still use the term "hemangioma" when, in fact, you should be searching for information on venous malformations.

From: http://birthmark.org/node/22



This is...
Forum: Help and Resources for Hemangiomas 06-17-2015, 01:28 PM
Replies: 9
Views: 10
Posted By missy
I'm sorry.... people POKE him? That's...

I'm sorry.... people POKE him? That's strange.

Please keep us updated on your decision! Let us know how things turn out.

Missy
Forum: Port Wine Stain Help and Resources 06-14-2015, 08:08 PM
Replies: 6
Views: 7
Posted By missy
Thanks for the update. I agree that you might...

Thanks for the update.

I agree that you might have to wait until she's a little older... if I were her, I'd also be scared and the physician sounds like a good guy.

Keep us in the loop and let us...
Forum: Help and Resources for Hemangiomas 06-10-2015, 05:50 AM
Replies: 1
Views: 2
Posted By missy
Thank you so much for posting this. It really...

Thank you so much for posting this. It really does help other parents to come here and be able to SEE results in other children.

Keep us updated on her progress, if you will.

Missy
Forum: Port Wine Stain Help and Resources 06-10-2015, 05:48 AM
Replies: 32
Views: 16,825
Posted By missy
What a fantastic post! I'd love to say some...

What a fantastic post! I'd love to say some profound and wonderful words about this, but I'm just speechless.

Let us know how things go with you! You are so very smart, articulate, and thoughtful,...
Forum: Port Wine Stain Help and Resources 06-09-2015, 04:55 AM
Replies: 6
Views: 7
Posted By missy
Hi and welcome! I can't really speak to...

Hi and welcome!

I can't really speak to percentage on treatment options... certain areas of the body respond better than others and every body responds differently. I also know that I've seen some...
Forum: Youth and Teen Support 05-06-2015, 03:36 AM
Replies: 1
Views: 2
Posted By missy
Hi and welcome! What have you already tried? My...

Hi and welcome!

What have you already tried? My suggestion would be to try something more mild on her face and if that didn't work out, then see another doctor. Although, this is a new issue to...
Forum: Announcements 04-17-2015, 01:24 PM
Replies: 0
Views: 1
Posted By missy
KTS Families Can Apply for Assistance from Brian C. Weber Memorial Travel Fund

Brian Weber was a kind, young man who lived his entire life with complications associated with Klippel-Trenaunay and Parks-Weber Syndrome (KTS), a debilitating vascular condition that affects...
Forum: General Resources 04-11-2015, 10:00 PM
Replies: 5
Views: 7,917
Posted By missy
Have you tried something like crowdfunding? Or...

Have you tried something like crowdfunding? Or gofundme.com?

I know that Dr. Levitin is planning to open an office in Guam. While I know it's a little closer to the philippines ... well, it's not...
Forum: Help and Resources for Hemangiomas 04-09-2015, 01:43 PM
Replies: 3
Views: 4
Posted By missy
That's wonderful news! Dr. Levitin is a...

That's wonderful news! Dr. Levitin is a fantastic doctor and we are so glad we could help.

First advice about traveling with a little one: don't stress! Are you flying? Did you get a hotel room...
Forum: Help and Resources for Hemangiomas 03-29-2015, 05:55 AM
Replies: 7
Views: 8
Posted By missy
http://birthmark.org/node/47#pennsylvania We...

http://birthmark.org/node/47#pennsylvania

We have lots of listings there. I believe that CHOP has a very good department.

Missy
Forum: Help and Resources for Hemangiomas 03-26-2015, 02:42 PM
Replies: 5
Views: 6
Posted By missy
Hi and welcome! No one can really answer a lot...

Hi and welcome!

No one can really answer a lot of your questions, except to say that earlier treatment is best. How fast and how large hemangiomas grow is very unique. I know that Sick Kids has an...
Forum: Help and Resources for Hemangiomas 03-21-2015, 05:40 PM
Replies: 77
Views: 57,854
Posted By missy
Oh, he's really gorgeous! I can't believe he's...

Oh, he's really gorgeous! I can't believe he's almost 6!

Missy
Forum: Help and Resources for Hemangiomas 03-21-2015, 06:12 AM
Replies: 77
Views: 57,854
Posted By missy
Um. No. I didn't get a photo! Oh no! Please...

Um. No. I didn't get a photo! Oh no!

Please try birthmark.org@gmail.com. I'll have to troubleshoot my mail in the morning. I'm so sorry. I really wanted to see him.

Missy
Forum: Help and Resources for Hemangiomas 03-20-2015, 02:12 PM
Replies: 7
Views: 8
Posted By missy
Hi and welcome! You should see a specialist. ...

Hi and welcome!

You should see a specialist. Early treatment is better and many times pediatricians are just not fully aware of all the treatment options. Where are you located? We can help you...
Forum: Help and Resources for Hemangiomas 03-20-2015, 02:11 PM
Replies: 77
Views: 57,854
Posted By missy
FIVE? Years old? OMG, time flies, doesn't...

FIVE? Years old? OMG, time flies, doesn't it?

Yes, do send a photo ... I'll attach it to the thread. contact@birthmark.org

Good to see you again!

Missy
Forum: Port Wine Stain Help and Resources 03-12-2015, 02:42 PM
Replies: 3
Views: 4
Posted By missy
Anytime! Let us know how things turn out. It's...

Anytime! Let us know how things turn out. It's hard to be all pushy, but really, sometimes you have to be. I remember talking to my family physician about wanting to run some additional tests for...
Forum: Port Wine Stain Help and Resources 03-11-2015, 03:00 PM
Replies: 3
Views: 4
Posted By missy
Hi and welcome! I think they're correct when...

Hi and welcome!

I think they're correct when they say there is less success in certain areas. But, that doesn't really mean NO success. Push for the treatment if you want to see if it will fade...
Forum: Help and Resources for Hemangiomas 02-16-2015, 03:32 PM
Replies: 1
Views: 2
Posted By missy
Hi! If it is hemangioma on his eyelid, you'd...

Hi!

If it is hemangioma on his eyelid, you'd need to contact a specialist. Who have you seen to date?

Try http://birthmark.org/experts.php and ask Dr. Fay ... that's my best advice right...
Forum: Help and Resources for Hemangiomas 02-16-2015, 02:39 AM
Replies: 8
Views: 364
Posted By missy
That's great news! Please do post updates, if...

That's great news! Please do post updates, if you can. It really does help other parents.

As far as her ankle, I think that's something you'll have to decide. Sometimes, pws can thicken with age,...
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