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Search: Posts Made By: juliemn
Forum: Port Wine Stain Help and Resources 01-15-2009, 05:35 PM
Replies: 3
Views: 769
Posted By juliemn
I'm not sure how they would treat the eyelid. ...

I'm not sure how they would treat the eyelid. That is a question for the doctor. I know that when my son receives treatment, they do not treat his eyelid or the area very near his eye so as to...
Forum: AVM Help and Resources 01-14-2009, 05:48 PM
Replies: 4
Views: 1,580
Posted By juliemn
Facial AVM's are rare. Although my son has some...

Facial AVM's are rare. Although my son has some vessels that show AVM characteristics in his face, he has not gone through anything like your son has.

When I first started gathering information, I...
Forum: Port Wine Stain Help and Resources 10-05-2008, 03:13 PM
Replies: 7
Views: 1,505
Posted By juliemn
I share your concerns, and it sounds like our...

I share your concerns, and it sounds like our children have similar birthmarks. My son has been seeing the dentist every 6 months since the age of 3. He is now 6. He does have bone overgrowth in...
Forum: Port Wine Stain Help and Resources 10-05-2008, 02:59 PM
Replies: 2
Views: 999
Posted By juliemn
At this point, I would find a doctor that either...

At this point, I would find a doctor that either specializes in vascular malformations or is knowledgeable in the different types of vascular malformations. I would start with the specialists listed...
Forum: AVM Help and Resources 10-21-2006, 02:34 PM
Replies: 1
Views: 2,121
Posted By juliemn
How super that she has such a great support...

How super that she has such a great support system!

I remember jumping through the insurance company hoops to get the out of network treatment Ben needed for his AVM.

Julie
Forum: AVM Help and Resources 09-19-2006, 04:44 AM
Replies: 3
Views: 1,974
Posted By juliemn
Since they seemed a bit unsure, I would...

Since they seemed a bit unsure, I would definitely suggest showing the images and results to a vascular malformation specialist. Hemangioma's are not generally still present at the age of 16. They...
Forum: Port Wine Stain Help and Resources 08-10-2006, 06:38 AM
Replies: 2
Views: 1,320
Posted By juliemn
At this point, I would bring it up to his...

At this point, I would bring it up to his pediatrician and see if he/she has some type of answer for the behavior. If you have a way to video tape the incidents...even better. That way the doctor...
Forum: Port Wine Stain Help and Resources 06-30-2006, 01:08 PM
Replies: 1
Views: 1,488
Posted By juliemn
You may want to contact the site admin. at...

You may want to contact the site admin. at birthmarks.com. Make up, including Dermablend, is discussed fairly regularly in that group.

Julie
Forum: AVM Help and Resources 05-23-2006, 03:43 AM
Replies: 5
Views: 3,412
Posted By juliemn
I apologize for the delay in my reply, somehow I...

I apologize for the delay in my reply, somehow I am not subscribed to my posts anymore. I was not notified via email as usual.

What an amazing job you've done! I can empathize with the hours of...
Forum: AVM Help and Resources 05-14-2006, 02:53 AM
Replies: 5
Views: 3,412
Posted By juliemn
I was curious about this syndrome, so I did a...

I was curious about this syndrome, so I did a google. You probably already know this, but I did find a support group on MSN for this syndrome. Just in case you didn't, I thought I'd post the...
Forum: AVM Help and Resources 05-14-2006, 02:46 AM
Replies: 5
Views: 3,412
Posted By juliemn
I've never even heard of this syndrome. How...

I've never even heard of this syndrome. How frustrating for you.

Have you been working with a geneticist? Sometimes they have the best information when it comes to such rare syndromes. I'd be...
Forum: AVM Help and Resources 05-03-2006, 03:43 AM
Replies: 7
Views: 3,341
Posted By juliemn
Is it a venous malformation or an AVM? If it's...

Is it a venous malformation or an AVM?

If it's an AVM and you've had surgery that did not remove the entire nidus, this could be the reason it keeps coming back.

There are several people who have...
Forum: Port Wine Stain Help and Resources 04-07-2006, 11:50 AM
Replies: 3
Views: 1,154
Posted By juliemn
Re: Questions

My son's treatment is done on most of the right side of his face. Everyone reacts a bit differently, but typical for him is a lot of swelling that starts several hours after treatment and lasts for...
Forum: Port Wine Stain Help and Resources 04-04-2006, 05:19 PM
Replies: 8
Views: 1,447
Posted By juliemn
Re: PWS questions about scheduled treatment

Many insurance companies cover this, though some take a bit more work than others. A doctor that treats PWS on a regular basis should be able to help you with your insurance request.

Julie
Forum: Port Wine Stain Help and Resources 04-03-2006, 08:35 PM
Replies: 8
Views: 1,447
Posted By juliemn
Re: PWS questions about scheduled treatment

It's a jungle out there...LOL. Weeding through information can be frustrating when it comes to this. The birthmarks.com site has a page dedicated to all the technical aspects of laser treatment if...
Forum: Port Wine Stain Help and Resources 04-03-2006, 01:54 PM
Replies: 8
Views: 1,447
Posted By juliemn
Re: PWS questions about scheduled treatment

I have to admit that I haven't kept up on any of the latest treatment options for PWS. We have been lucky enough to find a dermatologist that specializes in this, and we know he'll keep up with any...
Forum: Port Wine Stain Help and Resources 04-01-2006, 03:46 AM
Replies: 2
Views: 1,098
Posted By juliemn
Re: pws question

Laser treatment for a PWS is tuned to the vessels just underneath the skin. It shrinks the vessels temporarily. The length of time before the vessels begin to dilate again is individual. It depends...
Forum: Port Wine Stain Help and Resources 03-07-2006, 12:31 AM
Replies: 4
Views: 1,277
Posted By juliemn
Re: Talking to a Child about thier PWS

Ben's just gotten to the ripe old age of 4...and due to schedule issues had his first laser treatment in almost a year just recently. When he looked at himself in the mirror after treatment...he...
Forum: Port Wine Stain Help and Resources 03-01-2006, 01:54 AM
Replies: 4
Views: 1,358
Posted By juliemn
Re: What to do?

At this age it's probably fairly common to just diagnose the birthmark. Limb discrepancy should be watched for though.

Some doctors do proceed with caution when limbs are involved, as KT may be an...
Forum: AVM Help and Resources 02-19-2006, 01:54 PM
Replies: 1
Views: 1,632
Posted By juliemn
Ben's next embolization

Quick update

Ben's been scheduled for round 3 on June 1st in New York for the AVF in his brain.

We're all actually hoping that embolization won't be needed this time. If the angiogram shows that he...
Forum: Port Wine Stain Help and Resources 02-13-2006, 03:32 AM
Replies: 14
Views: 2,998
Posted By juliemn
Re: Need help determining if infant son's BM is a PWS!

A doctor that has a good knowledge of vascular birthmarks can usually make a visual diagnosis. There are a couple of types that sometimes require more testing.


Julie
Forum: AVM Help and Resources 02-08-2006, 04:46 AM
Replies: 5
Views: 2,097
Posted By juliemn
Re: Birth Control for treatment of Ovarian Cysts..and the effect on a VM

Sarah,

I believe Corinne has some information about hormone therapy and AVM's. She mentioned that it was published by Dr. Francine Blei. I also believe that someone in the group of doctors that...
Forum: AVM Help and Resources 02-08-2006, 04:39 AM
Replies: 24
Views: 6,964
Posted By juliemn
Re: AVM Left Arm

Sarah,

I think that Dr. Burrow's is well like by her patients from what I've read. I hope you have a good experience with her.

Julie
Forum: Port Wine Stain Help and Resources 02-08-2006, 04:33 AM
Replies: 9
Views: 1,581
Posted By juliemn
Re: insurance and MRI

OT.....hi hank! ;)
Forum: Port Wine Stain Help and Resources 02-08-2006, 04:33 AM
Replies: 9
Views: 1,581
Posted By juliemn
Re: insurance and MRI

The dermatologist may have a standard procedure that they use with the insurance company. I've heard some to be very helpful...and some not. If you find yourself having to fight the insurance...
Showing results 1 to 25 of 95

 
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