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  #1  
Old 07-27-2005, 03:46 PM
QCBirthmark
 
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Default Many questions.....

Hi I am new to the forum but want to say I am not new to PWS..my daughter (she's 5) has one on the left side of her face. She has been tested for glaucoma, and for SWS and doesn't have either. She has had 5 surgeries in almost 3 years..which honestly I don't feel that's enough for us to take an aggressive approach...we are getting ready to go in for her 6th one tomorrow. She is being treated at the Boston Shriners hospital. They are truly a wonderful group of people but then again it's hard to get in there bc they are a burn hospital. So here's my questions for you....we just recently changed insurance, I am going to try to find out if they will cover it, and if they do, does anyone know of a good doctor in the Rock Island,IL area or even in IL for that matter that I can take her to? I don't want to stop the surgeries at the Shriners hospital but she's starting kindergarten this year and I want her to be at the maint point before she goes into 1st grade. My next question is...with it being summer time i have noticed that her PWS has darkened quite a bit lately. Does that happen w/the sun? I only use suntan lotion on her w/an spf of 45....she actually said something to me about it the other day...it was almost like she was upset bc of it darkening. How can I handle that w/o making her feel bad? I have never made it seem that her birthmark is a defect or anything like that matter of fact in our house we have a saying...she walks around singing it..."I am beautiful w/my birthmark, I will be beautiful w/o my birthmark..doesn't matter what's on my skin....it matter what's in my heart. Mommy and daddy and sissy love me both ways." Don't know what tune she sings it to lol i think it's one she made up...but how do i continue to encourage her about it?

Okay this probably sounds really stupid to all of you but i just really needed to ask.

Thanks
Jeni....Gabbey's Mom

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  #2  
Old 07-27-2005, 08:13 PM
alexasmommy
 
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Default Re: Many questions.....

Hi Jeni....
Please keep up with the eye doctor and Glaucoma checks. Glaucoma is a life long issue for our little one's.
My daughter just turned 4 and she has a left facial pws. She has been treated very agressively, beginning at six weeks old.
Heat is a dilator and for many people their pws gets much darker when they are warm. My daughters gets dark every night in the bath tub. It may be hard to know if it is the heat or if you are seeing some kind of return. Your doctor ahould be able to help you. I do not know anyone in Ill. but I will look around and try to find a Vascular Abnormalities SPecialist near you. Are you willing to travel? and if so, how far?
All you can do is keep reminding her that she is beautiful and loved and her pws is a part of her. I know it is hard. I can't help you much with personal experience because my 4 year old just noticed hers a few weeks ago. She did not seem to be too concerned. Do you know anyone else with a pws? Do you think it might be a positive thing for her if she sees another child with a pws? If not in person, maybe online????
How did they rule out sws? AT what age? Did they do an MRI with contrast?
Good luck and nothing you can ask would sound stupid.
Please ask away.
ELena
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  #3  
Old 07-27-2005, 11:07 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Many questions.....

Hi Jeni,

I agree with Elena, you must keep check of glaucoma. I have SWS but not glaucoma. I have to get my eyes check normally every year but since I have been having other eye problems I have been getting it checked every time I see the doctor which is twice a month.

Just so you know the PWS getting darker is a normal thing. When ever your child is hot, cold, angry, crying, or any other kind of activity that makes her blood pump more it will happen. In the summer time blood pressure rises and that will do it as well. I can not even feel it, I have to look in the mirror just to tell.
She should always have sunscreen on when she is outside because the sun can prolong having to get laser treatment. The laser has to work harder to go thur the skin if it is tanned.

I suggest being trueful with your daughter about what is happening with her PWS. Let her know that it is normal for that to happen and she will not be able to do anything about it except to continue laser treatment. (it is reverse sycology) She is at the same again I started laser treatment 18 years ago. This will make her want to continue laser treatment as she gets older. I took some breaks from it but I kept doing it. I have had well over a hundred treatments now I am sure I lost count after awhile.

That is just my opinion of laser treatments after all these years it did more good for me then I know, but knowing about my condition at a very early age has helped me get past this years so far and has helped me to be able to share my feelings about it over the internet. If you where sitting across from me right now I would not have told you half the things I talk about on this group because I bottle up my feelings, but online I do not feel judged like I am out in the public.

I hope this helps and if you have any other questions please ask we are all here for you.

Hank
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  #4  
Old 07-28-2005, 03:37 AM
QCBirthmark
 
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Default Re: Many questions.....

We have never stepped away from showing her the difference in between her and others. At times she gets upset bc we are having it removed w/the lasers. We told her when she was about 2 that it was God's Handprint on her face (that's what it looks like), that as He ushered her into this world His touch stayed w/her. Because of that comment she gets upset at times that she's having it done. She understands a lot more than most kids that are her age but then again most kids that are her age don't have this. We have shown her pictures online of other children w/PWS and other Vascular birthmarks, and the of course she sees a lot of them at the Shriners hospital. She also sees a lot of children w/burns. The very first time we went out there (She was 2) she said to me..."Mom there are kids out there that look like me..." It floored me bc I thought we weren't emphazing her "looks." From then on we just kinda backed off a bit talking about the birthmark and the difference between her and other children. I don't know if we did well w/that or not...As the mom I think I worry more about this than I should.

As far as SWS she had an mri w/contrast when she was born and has had a couple of CT scans since then....not bc of the birthmark but bc lol my child is just like me matter of fact both my girls are...We are clutzes.. HAHA! On all of the CT scans there has never been anything present on the brain and on the MRI she was 100% normal. Or so the doctor said lol. Sorry it's very late and ya'll have to think I am a quack lol. I have a tendency to actually type the way I would speak...

Please wish us luck on her surgery on Friday. I am looking forward to going again finally. She is too, her favorite thing about Boston is the aquarium and that's our first stop after we eat lunch when we arrive tomorrow. I will post when we get home a report but it prolly won't be till Sunday usually we are all wiped out the first day.

Thank you for taking the time to read this. Oh and in my profile is our website if you would like to take a look at it.

Jeni
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  #5  
Old 07-28-2005, 03:55 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Many questions.....

What you said on here is completely normal for this site.
What you where referring to is what we call on this site "the mommy instict" (I know that is not spelled right). Mom's always think of the best for their child. That is normal and a lot of mothers on this site type what is on their mind. I do it too.

If your daughter ever wants to know why she needs to continue laser treatment show her my pictures I have on my website (address is in my profile). Geoff Ritchie's website address is on my site and his pictures would be another good one to show her what happen many years down the road without the right treatment. (if it starts to get aggresive) But I have never seen anybodies as bad as his. Your daughters PWS could ever get as bad as either of aweres with the technology these days and her's is not a grade 3. From her photos it looks like a grade 1 which is not very thick at all.

I wish you the best of luck on Friday and I can not wait to here how the treatment went when I get back from NYC from surgery on the 5th.

Hank
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  #6  
Old 07-31-2005, 01:20 PM
QCBirthmark
 
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Default Re: Many questions.....

Well we're home. It's nice to say that. Our trip was good other than a hotel issues, the hotel we had planned on staying at was supposed to have us be able to check in early.(I was prepared to pay for an extra night if they would have, told them that.) But unfortunately they didn't have a room ready for us until late late in the afternoon. Around 3 we went to the Shriners hospital to see our care coordinator and I told her what was going on, she called the Milner Hotel which is the one Gabbey and I always stay at, we were staying at a different hotel bc it was close to the hospital and my dad and oldest daughter went w/us this time. (That was soo nice to be able to show grandpa and big sissy!) Anyways we went to the milner got into our room and had a wonderful time Thursday night.

Friday was surgery day. Normally we are checked into the 7th floor which out there is the reconstructive unit. But they had a lot of burn patients on friday so we were on the sixth floor (which is a lot of waiting...it's kinda a lobby area.) She was fourth to go in, and finally we got in. They give Gabbey some medicine before surgery to make her a little loopy as we say in our house lol. This was she never remembers going into the operating room. She's sleepy. The doctor wasn't happy that she wasn't seen in 9months. He said that if we get her in every 3 months then in a year hopefully she will be able to be only going out for "maint"...I hope he's right. I hope it's only 4 more surgeries. Realistically though I don't think it will be though. Surgery went very very well. She woke up and amazed the nurses again (she always does.) She went from being out cold to waking up, wanting something to drink, something to eat, to wanting the stuff out of her, and then it was....um mom i gotta go potty...lol the nurses said wow when she wakes up she's ready and rearing to go huh...I just laughed. That's the way she always is. We then went down and got sissy, and grandpa and went to see a few people she loves to see when we go out there. Then off to lunch lol. She didn't eat too well and ended up feeling sick to her tummy too much to eat. We had to go and get her prescription and then the Shriner volunteers gave us a ride back to the hotel.
Saturday we were up at 2:45am est to get ready to go to the airport. and strangely enough we had about 20extra minutes doing it that way lol. All was well when we got home finally at 10:00am cst. Long trip but nice.

Now I have a question for you all though while we were walking around Boston on Friday evening (when we walked down to get dinner) she took her hat and covered her face. I asked her why she did that, and she said bc of the the looks people are giving her. On saturday at the airport she was trying to hide her face at times. I asked her what was wrong while we were in line to get our airplane tickets and she said she didn't like that people were staring at her. I need to know if I did the right thing here. I got down to her level hugged her and sissy at the same time, and said, "People stare because they don't understand they don't know what's going on are too scared to ask. So they just stare. If you tell them what it is then you are able to inform one more person in this world." Did i do the right thing? How do i handle that? I don't want her to do feeling as if she has to hide bc of her birthmark. Noone should ever ever have to hide bc of it.
Any advice would help on this as she goes to school on tuesday.

Thanks ahead of time and good luck on surgery hank!
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  #7  
Old 08-02-2005, 05:19 AM
juliemn juliemn is offline
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Join Date: Sep 2004
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Default Re: Many questions.....

I think you handled it beautifully!

Is this her first year of school? I'm assuming yes, because of her age. It's so hard to send our babies off to their first day of kindergarten....I cry every time. I know I will have a harder time sending Ben because of his facial difference....I'll be pacing all day. It will be doubly hard because he's the baby. Thank God it's still 2 years away. He always seems to amaze me though, he'll come home full of the day just like the others...I can almost bet on it.

Today, a well meaning woman leaned over to talk to Ben..."That's a pretty nasty bug bite you got, it even gave you a rash." Ben looks at here and is confused...so he says "where did the bug bite me?" She says, "Right there on your face" "Nope...that's my birthmark." She was a bit taken back, and sorry. So she did say I'm sorry to Ben. Ben said "Why?" He didn't even know it...but it was the perfect answer. Then he proceeded to show her a real bug bite....(a mosquito bit his arm). LOL That poor woman...she meant well. I think she was uncomfortable that I didn't intervene.

My older two kids went through this self conscious stage at about the age of 5....I think they finally realize that the world isn't just about them....and start to realize that we really do live in a very social society.

Sounds like your laser treatment went well....we're scheduled for our next in two weeks.

Julie
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #8  
Old 08-02-2005, 05:06 PM
QCBirthmark
 
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Default Re: Many questions.....

What a neat story. I just shared that w/my hubby and kids. Today was her actual first day of school. She's in kindergarten, she went to preschool last year though, but this if the first time of being all day. She and Ellie (my oldest) went for an hour and half. It went great only a few kids asked and well she explained like she always does. She is loving the idea of school and I was very surprised w/how well the kids reacted to her and the teachers sure there were a few stares but nothing mean in them.

I have a story of my own lol. We were at walgreens yesterday buying aquaphor for school for her birthmark, as we were going through the checkout lane Gabbey says..."This is my birthmark, and I had surgery on friday." to the cashier. The lady looked at Gabbey and said "Oh I am sure you will look beautiful when it's all gone. " To be honest i was a bit taken back by her comment and kinda got mad i mean as if she isn't beautiful now? Anyways sorry lol Gabbey handled it very well...she said, "I am beautiful the way i am." The cashier quickly rang us through and tried not to comment. I did speak up prolly shouldn't have but I did. I told her that Gabbey feels self conscious right now and when people look at her she automatically tells them. The lady's reply was well when she's done w/surgeries she will be a beautiful little girl. (Of course at that time I am mad bc that's the second time something was said to her/me about what she will look like after.) I did politely tell the lady that Gabbey is beautiful no matter what we are just doing this for medical reasons. I have to look at it this way though, at least we informed one more person.

Thanks for listening,
Jeni
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  #9  
Old 08-03-2005, 04:13 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: Many questions.....

I hear the message in the cashiers well meant words. Unfortunately we deal with family members of the same mind frame. Almost exactly the same words in fact. My Grandmother is sure that if we could just make it go away, life would be just fine, normal, and acceptable again. She doesn't mean it cruelly. She's just what I call "old school", and has always had a thing about appearances, and keeping up with the society standard. It's how she was raised, and I'm certainly not going to change her now. LOL

I just read between the well meant comments...I know she loves him like everything.

Julie

Good vent topic!
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #10  
Old 08-03-2005, 12:37 PM
imported_missy imported_missy is offline
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Posts: 80
Default Re: Many questions.....

You asked for a doc in Illinois? Go see:
http://www.birthmark.org/physicians_list.php#i

Also, keep having Gabbey checked for Glaucoma and SWS. There's a man who works for the SWS Canadian site who was not diagnosed with it until 34!! Though she's had a clean CT and MRI, keep on top of her checkups!

She sounds like a pistol!!

Missy
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