Knowing that your doing the right thing - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-14-2006, 05:25 PM
huntersmom
 
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Default Knowing that your doing the right thing

Hi all, I'm not really new to the website (been using for informational purposes and research) but I am new to posting.* I, like someone else who posted have guilt over my son's condition-feel that it's my fault, but I also have guilt over if we are doing the right thing by having it removed.* I fear when he grows up that he will think we didn't love him the way he is/was.* I'm not sure how to handle that so any advice from parents who may have dealt with this would be great.

Also my son has had several treatments, when I say several I mean like 10 plus maybe, and we see little difference in his mark.* His PWS is facial and I like I'm sure most of you worry how people will treat him as he grows up.* I just have so many questions:* are we seeing the right Dr, is he treating him appropriately, are we wrong.* My son is 3 now so you would think I had maybe come up with some answers, but do we ever really.*

It seems that I'm rambling, so I'm sorry, but if anyone could provide information and support I would be grateful.

Thank you in advance*
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  #2  
Old 02-14-2006, 07:08 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Knowing that your doing the right thing

Hi,

My son will be 3 in April..and though he has a hemangioma we are treating it similar to pws with lasers also. His h. is large on his face too. We chose to do laser because we felt it was the best route to saving the skin and facial features from further damage. Our son Nicholas(in my eyes) is the most beautiful baby in the world with or without his hemangioma. And in a perfect world others would see how beautiful he was too and not focus on the mark. But, because modern medicine can help him we have decided this is best. One reason lasering pws is a good idea is that it helps prevent the pws from getting worse as he ages. I would highly recommend getting another opinion if you aren't seeing the fading. No one setting or laser is right for each person. For example, our doctor has 4-5 lasers and will use a particular laser based on individual need and depth of the stain. OUr son just had his 8th tx. last week and the doctor used two different lasers during the same appointment. If you'd like help in finding another opinion let me know.

As far as guilt... I know it isn't easy to get past, but you are doing the best you know how to do... and he will some day understand this. If only we could see into the future and know what path to take. Our children will understand that we did what we thought was best with the information we had.

Yes, the public can be harsh...but I have tried very hard to make sure my son's self esteem comes from his parents positive attitude rather then letting him pick up on our discomfort with rude strangers. It helps having older son's that I can adapt some of the situations to Nicholas' possible future encounters. Even though we are trying to raise all of our boys to be strong self confident people... I am not blind to the reality that people are rude and in some way comments could be harmful. So, with that said... having a vb removed just takes way the obsticle. Kind of like braces for teeth... there are a few reasons why we get our teeth straightened...not just for "looks"...but for health of our teeth as well... and to eliminate the potential social issues. I guess what I am saying is that I see it both ways.... having it removed to spare our children from public rudeness...but I also feel strongly that we have to raise our kids to not run in fear and to stand up and be proud of themselves. My other children will/are learning that kids and adults too will always find a way to bring someone down...if it is weight, clothing, hairstyle...you name it. I will do my best to make sure they know how to handle situations and hopefully know how to cope. My wish for my children is to not let anyone bring them down and believe what they hear. I will one day tell my son (if needed) that it is the rude strangers that have the problem not him...they are not educated enough to understand. I want him to be able to answer questions from strangers not run in fear... to be proud of his knowledge and ability to educated. Nothing shuts up a bully faster then someone that can show confidence. Not an easy task to do in all cases, but that is my goal. My older son once asked me why we were having Nicholas' birthmark removed... he was afraid we would not recognize him. This kind of prepared me for the questions Nicholas one day might ask. My reply to his brother was, he will always be the same child no matter what he looks like... just without the birthmark. In my opinion the birthmark is NOT HIM...it doesn't define him... and having it doesn't make him less beautiful or less important. And removing it doesn't mean we are bothered by it or hate it or think less of him. So......in all we aren't removing it for superficial reasons in my opinion...only because we feel it doesn't belong there, we want to eliminate any obsticles in his way and the main reason is to stop further damage to his skin/face. I see it as a medical condition that is being treated rather then a "birthmark". The word birthmark often misleads us into thinking it is simple, apart of them because they were born with it...therefore it should stay. I just disagree in my son's situation. But, I am not saying all birthmarks should be removed... just for our situation that is how I feel.

Take care.

Corinne
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  #3  
Old 02-14-2006, 08:59 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Knowing that your doing the right thing

Hi hunter's mom,

I am 23 with a facial PWS. I am glad you started laser treatment when you did. I did not start until I was 5 years old. The technology was not there. I am glad my parents got me started on laser treatment because it could have grown larger then it did and form coble stones or even blebs.

Do not feel guilty for wanting the best for your child. When he is old enough to understand he will now that you where doing for him to have as normal of a live as possible. If you think that the laser treatment is not helping anymore first ask your family members or friends that only see Hunter every once and awhile and ask them if they can tell any difference in his birthmark. The reason I say this is because you live with him and see his birthmark everyday you can not see the long term effects of the laser treatment. Also, make sure he has plenty of sun screen on when out doors because it can make the laser treatment less effective on the birthmark because of the suns rays.

Second, talk to his current Derm and see if he/she is willing to be a little more agressive during laser treatment, tell him/her that you are not seeing any improvements. If they do not want to do more I would suggest getting another opinion just to see what they say. If you do not know of anyone else look in the resource section above in the tool bar click on find a physician and then find a doctor that is in your state or one you are willing to drive to.

Please keep doing the laser treatments for your son, no child deserves to go thru what I did growing up. The more you remove before he starts school or becomes aware of is condition the better. If you are interested in reading a paper I wrote on social issues and read more about my story you can visit my website at www.hankspws.com

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

Hank
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  #4  
Old 02-15-2006, 12:36 PM
huntersmom
 
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Default Re: Knowing that your doing the right thing

Thanks Hank for your prespective. When I do make comments to friends/family who don't see him often, they do say they can tell a difference. I guess I'm just a little down about things now because the last time we met with his Dr, he stated if he didn't see an improvement in the next two treatments, then he may not be able to remove it. I almost feel he is giving up and that has had an impact on me. I'm concerned if we change Drs that insurance will not pay or question why we changed. I'm just having a bad couple weeks with all this I guess, most days it doesn't bother me and I don't even see his mark when I look at him, but just based on what has been said to me in his short life by adults, I'm trying to prepare the best I know how for the future. Once again thank you for your input.
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  #5  
Old 02-15-2006, 07:06 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Knowing that your doing the right thing

Hi,

Still ask him if he is willing to be a little more aggresive on during laser treatment. If not, ask him if he would be willing to keep it as maintenance treatments. Laser treatment will not remove PWS permently yet in some cases. Technology has to get better.

Hank
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  #6  
Old 02-15-2006, 11:54 PM
dgherm
 
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Default Re: Knowing that your doing the right thing

My suggestion is to go with your instinct. That mommy gut tells us a lot sometimes. I don't think your son would ever feel that you wanted to change him. I think he will see it as Corrine said - like braces for teeth. If you don't feel right about the doctor, see another one. Talk to your insurance company and ask them if they will pay for a second opinion. My daughter had a hemangioma (obviously a different situation) but my insurance company preferred paying for the out of network specialist. They felt it was more cost efficient in the long run.

Good Luck, Debby
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  #7  
Old 02-16-2006, 03:17 AM
kiddiemom3
 
Posts: n/a
Default Re: Knowing that your doing the right thing

Hi,

My daughter is 3 1/2 years old and has had about 17 - 18 treatments. As a mother you're asking the right questions and feeling the right things. Personally, I know that I'm doing my daughter a favor by removing it now since they say that it's easier and more beneficial to do it when they're younger. My dermatologist did mention that the stain we not totally go away. However, being that it's much lighter than at birth makes it less noticeable.

When I once mentioned to the Dr. that I didn't see any results, he gave her a stronger treatment. You might also want to take pictures of the mark before treatments to compare - but make sure to use the same lighting. I was just looking at some pictures of my daughter and you can't tell that she has a birthmark however, in real life you could tell. (lighting played a role)

You might want to go for a second opinion to a different Dr. see what he says if there's anything to do. I also heard they are in the process of doing research on photo something (forgot the name) a new treatment to treat the birthmarks.

Good Luck!
kiddiemom3
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  #8  
Old 02-26-2006, 04:38 AM
clairesmum
 
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Default Re: Knowing that your doing the right thing

Hi Hunter's mum

My daughter is also 3 years old and has had 9 tx's so far. We were informed at her last tx that the doctor would not be doing any more tx's until she is 5 and then 13. Arghhhhh! Unfortunately at the time, we are in Australia and have to use the public system, we had no other option but to be put on hold for the next 2 years.

Miracles do happen. We have had a doctor, closer to where we live, come on board and get theatre time to treat our kids. We have an appt at the end of March to see what he has to say. So finally a second opinion.

Keep photos. I have photos of Claire before tx, after tx, and about 8 wks down the track. This helps notice the difference, and is also a handy thing to take along to another doctor. See if you can get the laser details at your next visit. Joules being used etc, so if you do choose another opinion you can give them everything that has happened in the past.

All the best I know the heartwrenching feeling when the doctor says no more. By the way, Claire wants more "dots" so at the moment we will continue this for her.

Cheers
Catherine (claire's mum 3y4m facial pws)
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  #9  
Old 02-26-2006, 01:13 PM
QCBirthmark
 
Posts: n/a
Default Re: Knowing that your doing the right thing

Hi Hunter's Mom~

My daughter Gabbey is 5 years old and has had 7 tx's so far. There are days where I wonder if I am doing the right thing or not. She loves where we go for her txs so in a way I know I am. The only thing that she has problems with are the stares on the trip home. But we work it all out.

I completely agree w/Corinne (I believe she's the one who said it..) take pictures. That's the only way I am ever able to see any difference because I am w/her day in and day out. You will find it will help you too. A second opinion is always another way to go too. The "g's" (guilts) as we call them in our house come and go and what I do when they come I come here. This group of people is phenominal. (hope i spelled that right lol) You can always get advice here.

If you decide that you need a second opinion I know there is a list of doctors on this forum and that you might be able to find one close to you.

As far as what we tell Gabby, well to be honest we tell her everything that can happen if it's not treated. She will be able to make the decision as she gets older to continue them or not, but unless she is throwing a fit and is terrified of the tx's we will continue. We always tell her...You are beautiful w/your Birthmark you will be beautiful w/o it, because you are a beautiful person inside and out. Now she did get upset a year or so ago because she heard me talking to a mother in a store how it was the shape of a hand and that when she was born we decided it was God's handprint on her face. She was upset to know that we were removing it but when we told her it's always going to be there but just not on the outside well she was much better that and the fact that lol she has a "secret b-mark" on her left hip bout the size of a stick pin (it's a cafe au lait i believe). All in all she is doing great about it right now. She's in kindergarten the school is great her teacher is so wonderful and the children adore her. (I mean that when I say that bc I have been there when she and them don't know I am.)

Hope this helps.
Jeni Hoeper
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  #10  
Old 02-27-2006, 07:28 PM
huntersmom
 
Posts: n/a
Default Re: Knowing that your doing the right thing

Thank you all for your support, encouragement and advice. We go Thursday for our next treatment and I'm going to be a little more aggressive with the Dr about laser settings. He had told me in the past, but he doesn't really share a lot of info when asked. Maybe I'm just not asking the right questions. I think Thursday biggest problem is going to be keeping him (hunter) out of food & water. Not scheduled at hospital til 10 and since he is put to sleep-nothing to eat or drink. Lovely!! Oh well, just wanted to Thank you and give a little update.
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