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Venous malformation
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amother
Copper


 

Post Sun, Apr 29 2018, 1:18 pm
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amother
Brunette


 

Post Sun, Apr 29 2018, 1:22 pm
amother wrote:
my daughter gets these vesicles/blisters all over her tongue and on her mass that pop & bleed. it was really bad until her first treatment, it would pop & squirt literally till the ceiling. was also very hard to control & get it to stop. b'H got better after her first treatment. but has recently made a comeback due to her flare up. (she is now 9 months old. first treatment was at 3 months).


No never had bleeding.

Maybe we should start a support group or something it’s so rare and isolating
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amother
Copper


 

Post Sun, Apr 29 2018, 1:24 pm
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amother
Copper


 

Post Sun, Apr 29 2018, 1:25 pm
amother wrote:
No never had bleeding.

Maybe we should start a support group or something it’s so rare and isolating
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amother
Copper


 

Post Sun, Apr 29 2018, 1:28 pm
amother wrote:
Yes and yes. I also need to go back for treatment after other surgery, including having my wisdom teeth out. I sometimes feel a weird almost creepy crawly feeling when it is growing. I find that going in for laser soon after helps, since I had my big excision to get most of the mass out.

I used to find that it hurt in the mornings, and sometimes I still do. It depends on what position I sleep in, and is more likely to happe when I am under the weather.

I so wish doctors had understood these things when I was younger. I had a mark on my mouth when I was young and the doctors said it would fade. Years later it was areal problem. Now, one of my babies had a flat mark when born. I took him to Dr. Waner at age one month. At six weeks, they lasered it off. No sign at all since, five years later.


what position is better to sleep?
also, curious to know (hope you don't mind my asking), did they think there was a connection between what your child had? b/c I was told that not genetic...
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amother
Brunette


 

Post Sun, Apr 29 2018, 1:34 pm
amother wrote:
hehe, berenstein has a weird sense of humor. I don't care about it. but I understand what you mean.


The malformation by my mouth occurred during my first pregnancy...didn’t have it before it. But I had others before so knew what it was right away.

They used bleomycin. It was more painful than I expected but that just can be cuz I thought I would b totally back to myself by the next morning. I didn’t have any arrangements made for my kids n after procedure scrambled to find places for them to stay for few days
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amother
Brunette


 

Post Sun, Apr 29 2018, 1:36 pm
amother wrote:
I'm in! I know one other person whose child had a LM similar to my daughter. but she is perfectly fine now b'H!

How do we go about it?
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amother
Copper


 

Post Sun, Apr 29 2018, 1:38 pm
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amother
Brunette


 

Post Sun, Apr 29 2018, 1:40 pm
amother wrote:
Have you ever had doxy? were you discharged right away? did you have any side effects from the bleo?
my daughter usually stays one or two nights depending on how long they want to monitor, but wondering how it is with an adult...

What’s doxy?
No complications to bleo but the precautions taken after are annoying, was outpatient procedures.
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amother
Gold


 

Post Sun, Apr 29 2018, 1:43 pm
amother wrote:
Do you see it swell when she is sick? also are you in NY? which drs did you see?

I don’t see it swell when she’s sick. It’s on her head, behind her ear. We go to Hopkins. It doesn’t seem to bother her but if it were on a place that cooks her bumped or cut we’d do something about it. It was an ENT who told us he wouldn’t touch it with a ten foot pole since she could ch’v bleed out very quickly. If it bothers her or gets bigger we will deal with it.
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amother
Copper


 

Post Sun, Apr 29 2018, 2:17 pm
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amother
Brunette


 

Post Sun, Apr 29 2018, 2:34 pm
amother wrote:
doxycycline. its an abx used in sclero. swells up area like crazy.
so nervous about the bleo precautions with my little munchkin...


Ye how do you keep a baby from scratching herself?
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amother
Royalblue


 

Post Sun, Apr 29 2018, 5:03 pm
I changed my posts to amother, because I realised that given the rarity of vm and my location, anyone who knows me irl now knows my screen name.
What happens to all amothers who quoted me? Can you please edit posts to remove my sn?
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amother
Copper


 

Post Sun, Apr 29 2018, 7:11 pm
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amother
Brunette


 

Post Sun, Apr 29 2018, 7:13 pm
amother wrote:
Scratching Head don't know!
does it really cause anything? will something happen if she will scratch herself? she is so active (b'H) I can't imagine keeping her 'contained' for 48 hrs...


There is a chance of it causing a darkening if the skin
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amother
Copper


 

Post Sun, May 06 2018, 2:09 am
to all amothers above who have or child has VM. any of you tried sirolimus? what about steroids- ever needed?
Also curious, when doing sclero in adult- do you have it done with general anesthesia or local?

On another note, my baby is iy'H having MRI and treatment this week, so you can keep her in mind that it goes well be'H & SEE RESULTS!
Thank you!
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amother
Brunette


 

Post Sun, May 06 2018, 2:22 am
amother wrote:
to all amothers above who have or child has VM. any of you tried sirolimus? what about steroids- ever needed?
Also curious, when doing sclero in adult- do you have it done with general anesthesia or local?

On another note, my baby is iy'H having MRI and treatment this week, so you can keep her in mind that it goes well be'H & SEE RESULTS!
Thank you!

What’s sirolimus?
Was general anesthesia
Ur baby’s treatment will iyh be extremely successful! We’ll be davening for her!
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amother
Copper


 

Post Sun, May 06 2018, 2:28 am
amother wrote:
What’s sirolimus?

Sirolimus is an immunosuppressive drug that is often prescribed for these malformations. supposedly to keep from flareups & keep it soft or something.
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amother
Copper


 

Post Mon, May 14 2018, 11:22 pm
Hey everyone May 15 is Vascular malformation awareness day!

So ‪#‎putonyourbirthmark‬ and spread the awareness.
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amother
Brunette


 

Post Tue, May 22 2018, 1:36 pm
On another note, my baby is iy'H having MRI and treatment this week, so you can keep her in mind that it goes well be'H & SEE RESULTS!
Thank you![/quote]

Been thinking about you and your baby! How’s your baby doing?
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