June 15, 2009

Cameron's Port Wine Stain

I have mentioned before that my beautiful soon to be three-year old, with gorgeous eyes and long lashes, has a fairly large birthmark on his face. A port wine stain.



I don't know a whole lot about port wine stains (PWS) except for the info that dermatologists give us. Which really isn't much. His face is asymmetric, the side with the birthmark chubbier. This is common we are told. The MRI done when he was one concluded that it is superficial only--not deep into the tissue. Of course what tissue, I don't know, because obviously it is in the skin tissue, or does skin not have tissue? Anyway, there are no lesions on his brain either, which is good because facial PWS are often associated with Sturge-Weber syndrome. I don't know much about that either except that the PWS somehow involves the brain and can causes seizures.

He has a speech delay also. This is not associated with the PWS. Cameron looks like and has so many of the same characteristics as my 12 year-old Brennen, and Brennen was a late talker too. Thank goodness, though, Cameron is more laid back so his speech delay has been much easier to handle! The past six months with speech classes we have been focusing on getting him to use words. To "get" words, as they say. His comprehension score was way high, but expressive speech way low. He can understand but not speak. I still don't understand how he cannot "have" a word which he understands. Anyway, now he speaks sentences and such. We just don't understand much of what he is speaking. Now the focus is on articulation--pronouncing the sounds correctly.

Since we have started articulation, the speech therapist has noticed his tongue is asymmetrical (due to the PWS), which is part of the reason he is having a hard time making the right sounds. Also, he tends to hold his jaw to the right, which makes him look like his jaw is misaligned. But the doctor said his jaw is fine, it's just the muscles. And he doesn't open his mouth very much while talking. Having said all that, we are working on strengthening and making him more aware of those muscles on the left side of his face and tongue--oral motor exercises. We do fun things like drink out of curly straws, lick pudding off our plates, and chew licorice to exercise those muscles.

Because some of the articulation issues are from the PWS, I did a lot of research on the internet lately about PWS. I was so excited to find a website called birthmarks.com. It has other people's stories about their PWS (and other types of birthmarks) and an online support group. I don't know anyone personally with child with a port wine stain so this is great! And as we are planning to do laser surgery beginning when he is four years old, it is nice to be able to read and learn more about it through others' experiences. And also learn about what to expect as he grows older.

What my research made me most aware of however, is that we, or rather Cameron is truly blessed with the birthmark that he has. It is not around the eye, which can cause optical problems, it does not involve the deep tissues which can swell up and cause deformity, and he does not have Sturge-Weber Syndrome. And I also discovered that there are so many children born with other types of facial deformities that I didn't know existed. They have so many more challenges than Cameron will ever face. I know that it takes special spirits to deal with birth defects and these people have a special place in heaven. I have been humbled and grateful for the small challenge given to my son and me, instead of what could have been.

7 comments:

tonya said...

you are such a good mom. Your kids are lucky to have you and I'm still a little mad at you for moving away:)

Krystal said...

So interesting...the post I just made was about a disorder my niece has and it is also abbreviated PWS....anyway, that is just a random thought.
Cameron is a sweet little guy and so stinkin cute!! I think he's lucky too, not only to avoid the issues he could have had, but to have a good mommy that cares for him and gets the assistance that he needs. I'm sure gonna miss his sweet smiling face :)

Michelle Fainberg said...

Hi,
I am Michelle Fainberg. Please feel free to talk to me whenever. Your son was in the exact same place I was 14 years ago. My birthmark is almost the exact same! The same thing happened with my tongue and I went to speech therapy and I speak perfectly now. I also had 10 laser treatments but I don't want anymore. He will grow up and be teased, it's inevitable. I hate people teasing me and it made my self confidence go down drastically. I wear makeup now every time I leave the house to cover it up. That is the best option for girls, guys on the other hand is really only facial hair to hide it. If you start treatments early like my parents did it will be lighter, but it does get darker over time. The first picture you have posted, I have a baby picture like that exactly. I am here if you have any questions, because till this day, I hate my birthmark but it is a part of me, something I have finally learned. The best lasers that work are post dye lasers, it's painful though. Do what you can when he is young, because when he gets to my age, he won't remember the pain. I had two done recently and it was horrible. This birthmark in my opinion is one of the worst to grow up with because of bullying and taunting. You have to teach him to be strong and find friends that will love him for himself. One question, does he have the port wine stain on his bottom lip? If so I have another story that could happen to him as it did to me. Feel free to email me at sportgurl1993@aol.com Thanks for reading (:

Anonymous said...

Hello,

I'm from Asia, my PWS has been my buddy since my birth. My PWS covers most of one side of the face.

Friends and family have tried to get me laser treatment, too. But as you all know, some good doc's will tell us the pros and cons, and the prognosis really varies, depending the size PWS, skin type, and will be a bit like "burning heat" on the face, though, PWS will not completely disappear unless to have more & laser treatment sessions in the future.... I decided to give it a try "patch test" on my face.

The "burning heat" made me sweat! Shot of anesthetics? Yes, offered but good doc's advised: not wise to use frequently. Most of all, I was advised not to be exposed to sunshine...no beach until the itchy healing process was over or it will get darker pigmentation on my new delicate skin. 5 laser sessions out of 12 or something, my family and I have decided to stop laser treatment.

Looking back and even as a grown-up now, my PWS has been teaching me a whole lot, ups and downs, but have to say that my family, especially my mom, my friends/partners are so great because they try not to over-protect me but to walk along with me.

Bahadır said...

Hello. My name is bahadır, am from Turkey. I also have a birthmark similar to Cameron. Add to my picture, you will be surprised, exactly the same. Now, am 21 years old. I just wanted to write them.
http://s12.postimg.org/rn0mlrsm5/bahad_r1.jpg

Melissa said...

hi Bahadir. Thank you for contacting us and for the picture. I showed Cameron last night. He has had 11 laser treatments and we are not sure about more.
Do you have problems with teeth or lower lip?

bahadır said...

I have had 7 laser treatments in Turkey and still have. Treatments are useful to me, I think. I have not problem with teeth but my lower lip bigger than usual. Has Cameron any problems with his face as psychological? I have it little unfortunately. Write my e-mail, you can contact me.
jardread@hotmail.com

Have a good day!