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Old 08-11-2005, 02:02 PM
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Reading some the of the posts and looking at my sons birthmark, I have no question that he has a port wine stain now. It has turned darker almost over night, though still has times you can only faintly see it. We are going to the Milwaukee Children's Hospital at the end of the month and will find out treatment options. My question is how do should we handle peoples questions, comments, and help our son so he will not suffer emotionally as he grows up. I understand that we must first accept it ourselves and come to terms with this new thing I knew nothing about. There are so many emotions and I find myself getting slightly on edge when I see someone in a store look at our baby and than that brings on the feelings of guilt. He is an adorable little boy and I should not feel like people are looking at his PWS. I know if I dont get a grip on that he will be able to sense what I am feeling. I love my child and dont want anyone to cause him pain including myself so I am hoping someone can share what they have done to deal with this and what they tell their child.
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Old 08-11-2005, 06:49 PM
nickbar nickbar is offline
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Location: Pacific Northwest
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Hello. This is probably the hardest thing as a parent. We love our children unconditionally, but we just don't understand why others don't see what we see. I think the first thing is to be aware of how you react to the birthmark and how you react to the way others look at you or your baby. THe baby will pick up on this. You don't want to pretend nothing is there...but I think it is best for the child to know growing up that a birthmark doesn't define who you are and what you can do with your life. In my obvervation the children with the highest self esteem have parents that taught their children about differences and how it doesn't need to be an obstical...the people that make fun or make comments are the one's with problems... that exterior only matters to them. Ok......easier said then done as we all know how rough it is to grow up even with the thickest is amazing what kids can come up with to tease someone about. I think it is also important to have balance (for lack of a better word) child should know that it is ok to be sad when someone is mean as we don't want it to build up inside of them and for them to think feeling down isn't right..... am I making sense? I think if they know that we all struggle with something...sometimes it is more obvious to the public...but we all have something that gets us down or makes us worry.
Also, I think if your child knows about true friendship... a person that would put you down is not worth having as a friend......etc.

Another thing I've noticed and have posted about before... children often will stop teasing others once they are educated. This goes for adults too...but children seem to be the most willing to learn and change their attitudes. I've seen how a child with a disability was left out and teased...but once his parents and teacher sat the class down and explained about the child's conditions...they all rallied around him and he became everyone's buddy and seemed to be the STAR of the class. I can't stress enough how much it can be valuable to everyone involved with a little education. I know many of us with young children get so tired of the comments in public....and so some of us carry cards with more information so we don't feel like we have to give our the whole story again. We have a member on our support group site...her son did a study on the publics reaction to birthmarks....and recorded their reaction to seeing first they were "big eyed" shocked....felt sorry for...etc. but once they received some facts about birthmarks their attitudes changed.

I would like to invite you to join a support group on msn. It is a great place to share our ups and downs with a lot of great advice from parents that are going thru this. Also you might want to check out is a great pws group with a lot of specific information on pws and dealing with treatment and all that goes along with pws.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 08-12-2005, 12:55 AM
eprmo eprmo is offline
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I have a 15 year old daughter who grew up with a large H on her nose. In those days,,treatment was not so available,,so we truly belived it was OK, to let it go away itself...Obviously now,,we would know better,,but more on the subject of the question you asked,...

Corinne said everything exactly what I would say...the only addtional thing I always stressed to my daughter..Is the feeling,,that once she is ok with herself,,and I believ children will be, ok, when they hear over and over from their parents who they beautiful and wonderful they are......once they know and feel they are beautiful and they truly belive they are..when someoene says something "hurtful"..they need to know,,that has not changed anything about who they are.....the other peoples words,mean nothing..

example I used..... My daughter has dark brown hair..... FACT...clear as day!!! if another child came up to her and said....EWWWWW you have ugly red hair....(no offense to red-heads,,just an example)..Would that be a true statement?? Should she feel hurt?? Was it accurate.... Is her hair even red.......

Get my point....Only from within can a child really protect themselves from hurt...As parents we need to instill in them,,how truly beautufl they are!

Now of course,,,that doesn't mean that they won't be picked on,,but, they can acknowledge their b-mark, and educate, and explain. to others what it is...It always gave my daughter a sense of POWER... She had knowledge about something that most people didn't.

Anyway,,, I hope this wasn't to long.

Elissa Rifkin
VBF Developmental Specialist
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Old 08-12-2005, 04:39 AM
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Hi !!
Corinne and Elissa gave you such great answers, that I really have nothing to add!!!
I will only say that definately seek out a Vascular Abnormalities specialist for a correct diagnosis. It is very important to get a correct diagnosis for many reasons, but I will name a few.
If it is on or near his eye, you have to see an eye doctor for evaluations -to rule out any possible eye issues.
It is is on T-1 and or T2-these areas which include the upper and lower eyelid, temple,forehead, upper cheek- you would need to rule out SWS.
ANd yes, there are Doctors who will laser an infant. We began laser tx on my daughter when she was six weeks old. If it is a pws, laser is done for cosmetic BUT medical issues is the main reason. They can have future medical issues later on in life.
ALso, hot and cold tend to affect PWS. When my daughter is sleeping, you can barely see the outline. But you put her in a pool, or if she gets mad, it looks very dark. It changes with her mood. If she is sick, or with fever, it gets darker. I know before she shows symptoms of illness that she is getting sick because her pws gets so dark. Other people say that it lightens with heat and is darker in cold. Every pws is different.
Hang in there and do not stop searching for a correct diagnosis for your little one. There is nothing wrong with getting a second, third and fourth opinion if needed.
Please keep us posted. And ask any questions that you may have.
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Old 08-15-2005, 02:37 AM
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Thanks for the advice it all makes sense, just hope we can follow the advise and raise him to be open and accepting of himself.* I can really see the benefit to education, especially with family.* We will need their support instead of comments that make us feel like we are blowing things out of proportion.* Some family members seem to think that this will just go away with time.* We will need to address the reality of the situation, though I dont want to get everyone worried about SWS or any other complications.* I need to prepare myself for the day someone comments in public, I feel so on edge with a look, dont know how to handle* comments.* It is amazing to me reading some of the other posts that people are actually that rude or lack understanding to make such comments.* I understand that people judge the unknown, but come on.* I will have to learn to take everything in stride.* I am a social worker by profession and have dealt with a lot of things and thought I was prepared for parenthood, but for whatever reason PWS was something I was not prepared for. Actually I didn't know anything about it and especially was unaware of the potential medical problems that could be associated with it.* We have learned one thing quickly and that is to question the doctors about everything, including why we are being referred somewhere.* I will not have blind faith in the medial field anymore.* I guess the more I educate myself the easier educating others will be and the more we can advocate for our child.* I am not really big on explaining the situation to everyone who asks, but on the other hand the more people know the more it will help our son.*

I hope that we can keep balance in our sons life so he can stay open with us about how he feels.* I worried about him growing up with depression before the birth mark now I worry even more. We live in a small community so people should get to know the real him.* I hope that helps them see him how we do.* *I liked the example with the hair color, seems like it would be pretty effective at getting the point across.*

On a completely different topic, do all PWS's spread or is what you see what you get with some.* I worry about his birth mark spreading down his face more.* It is getting darker, but does not seem to covering more ground, he is only six weeks old so it is a bit early but wondering if anyone knows?

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Old 08-15-2005, 08:10 AM
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Hi !! A pws usually does not "grow" or spread. It will grow with the child though. The size of the area if you measured it, would measure larger as the child grows, since it grows with them But usually, the deficiency in the nerves does not "spread". You will always hear the exception to the "rule". I am only aware of one adult that has said that she now sees a small area of pws that she knows was never there before SInce every pws is different, nothing is ever written in stone so to speak.
Pws usually returns. That is why most docs will say that with the current laser technology, you need at least yearly treatments to help keep progression at bay. Many believe that what pws is left-what the laser was unable to reach etc.- can return or proliferate as they call it...... In the future if laser technology advances so pws can be eradicated 100 percent, that yearly maintenance opinion may change. We can all hope....
Please before you make your self crazy, find out for sure if it is a pws. Once you have a correct diagnosis, and have a plan, you will know what direction that you need to go in. I would hate to know that you are sitting there think about SWS, Glaucoma and laser tx and it is not a pws. That has happened before . Believe me when I tell you........... Corinne can tell you storied for hours about all the mis-diagnosed parents that she has dealt with...........
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Old 08-15-2005, 03:02 PM
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That is a relief to hear that it does not usually spread.* I have seen three doctors now who all think PWS.* It would be great if they tell us different when we go to Milwaukee, but I am not going to get my hopes too high when there is a high probability of having them dashed, though one should never stop hoping.* For me personally I have to take it as my son has a PWS, which I belive is probably true and than if the docs and this thinking is wrong, that will be great. If that makes any sense. But I know what you mean about misdiagnosis and doctors, my father died because of oversights and assumptions by his doctor and him not advocating for himself.* I don't have blind faith with the medical field and after a couple of pointless visits with our son already know to question everything. We have an appointment in a couple weeks with an eye specialist* to have his eyes* checked out as well.* I am not overly concerned about SWS, but had a doc say he had a 20 percent chance, but to put it politely she was an idiot.* We saw a more experienced doc who has treated PWS and SWS who said he did not think we had to worry about SWS,* but did seem to think PWS.* The eye specialist and derm specialist is our starting point and we will go from there with possible treatment if necessary, additional testing etc.
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Old 08-15-2005, 06:31 PM
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I completely understand where you are coming from, and I agree 100% w/Corinne on her advice. My daughter is just starting school and so far it's been positive. Even the one comment she got wasn't a "bad" comment. This all being said let me tell you I never stop feeling guilty. I get mad at times and frustrated, but then I look at Gabbey. She is so wonderful and to be honest she is more accepting of others than my oldest. She doesn't even question a person w/abnormalities. She just takes them as they are.

My oldest has had a few issues w/judging kids before she got to know them. The perfect example is her best friend now has glasses and had glasses when Ellie met her. I told her the very first day of school to talk to her. Against her wishes lol so to speak she did and now well lol they are attached at the hip. Another way I got her to understand that the outside doesn't matter is I took a book and covered it in a paper bag. I then took plain paper and wrapped it in beautiful wrapping. (The book was/is one of her favorites.) But to make a point I asked her which gift she would like to keep. She of course picked the one packaged in the beautiful packing, she opened it and was rather disappointed that it was plain paper. I then showed her the other "gift" she opend it and wow ya know there was her favorite book. It was a really good lesson for her.

Just remember it isn't/wasn't your fault. You will have good days and bad days. On the bad days those are the days that you need to get on here and talk w/others who are in the same situation as yourself.

Hope this helped.
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Old 09-05-2005, 11:46 PM
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Pretty creative with the wrapping of the books and what ya had to say was helpful, thanks

we got pretty good news at our Dermatalogist appointment. She said he has a low grade PWS and that she did not feel it would show anywhere other than what we see right now. A good deal of his PWS will be in his hairline and would not be treated, the remainder covers about half his forehead, maybe a little less. The doc said she did not feel we needed an MRI at this point as it did not seem to involve his eye, but wants him to see the eye doc twice a year. She wants to wait several months for treatment to see if he has any fading and would not want to put him through more treatments than needed. We have to go back in late spring if we opt for treatment and if insurance will cover it. We never knew being a parent was so up and down. I am so glad we did not wait six months to see the specialist like our pediatrician wanted, we would have went insane. At our most recent pediatrician appointment the nurse told us that we shouldn't worry about the rash on his forehead as it will go away and is completely normal. Makes me question if they know anything about children, but can understand even more how other people could look and wonder if our nurse even gets it wrong.
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Old 09-06-2005, 12:38 AM
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Hi !!!
Please don't take this the wrong way and I am not insulting your doc BUT if it is a PWS it will not fade on it's own. It will appear to become "darker" or "lighter" depending on temperature and his well being. If he is happy or mad.
Generally speaking, if the stain is causing the Doc to reccommend eye doctor visits, than they usually will also reccommend an MRI.
I just don't want you to get your hopes up that it will fade on its own.Stork bites can fade on their own.
The forehead tends to respond well to treatment. My daughters scalp was treated because she lost all her newborn hair and it was possible to treat. If she did not lose her newborn hair, tx of her scalp would not have been an option at that point.
PWS is not commonly seen and many medical professionals have never seen one. It is not covered in Nursing SChool. Just the common "birthmarks" are mentioned and mentioned very briefly.
Good luck......
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