3 month old with PWS-Questions

[momofAddie]

When Addie had her laser therapy, I asked A LOT of questions concerning her anesthesia. She is treated at Arkansas Children's Hospital. She received general anesthesia with a mask. They gave her nitrous oxide (like at the dentist) and sevofluorene. She never got intubated or even had an IV. It went superfast! From the time they took her to the time the doctor was finished ended up being less than 10 minutes! (probably closer to 5). She slept in recovery for a very short time, ate, then we left. All in all from start to finish to in the car on the way home was less than an hour! (plus about an hour for them having us arrive early). She was given Tylenol for pain and had no problems.
I have never posted pics on here before. If you tell me what to do, I'll post them, otherwise send me your email address and I will email them to you both personally.

[samanthasmom]

Your little girls are ADORABLE!

My daughter has a similar PWS except she has patches on her head and it extends on to her neck and chest. She had and MRI of her brain with contrast at three months old and SWS was ruled out. She was under anesthesia for that so we felt OK that she would handle it well for her first PDL treatment at 6 months. She did and was at home that same afternoon jumping around and laughing in her exersaucer! It was a wonderful relief to her very anxious parents.

I will try to attach before and after pictures of her treatment as well when I can figure out how to do it. I know seeing what we could expect helped us mentally prepare for her first treatment. Her second treatment is next week already. Time flies!

[zuzuspetals]

That would be great! Let me know if you need any help posting pictures. I'm not the best at giving directions, but I can try...

[missy]

If you can't post a photo, send it as an attachment to contact@birthmark.org and let me know that it goes in the PWS section and I will post it for you!

Missy

[QCharmaine]

My 7 month old son also has a PWS on his face, he has had 4 laser treatments so far. I have not noticed a huge lightening yet, but that is just my personal opinion.
They did not do an MRI on my son, they felt he was low risk for SWS based on the location of his PWS.
I finally joined this board tonight, it is nice to find others in the same situation and I am learning a lot by reading these posts.

[DisneyTeacher]

Originally Posted by zuzuspetals

3.) Does anybody know about Dr. Bailess/Mallory? Is she a good doctor to see?

Dr. Mallory is my son's doctor and we really like her, her staff (especially her nurse Patty) and the nurses at Children's Hospital.

[zuzuspetals]

Thanks for your input! So far, my experience has been good. Patty really is the best!

[DisneyTeacher]

By the way, your daughter is beautiful!

My son had PDL surgery every other week for almost a year, we got to know Patty and Dr. Mallory very well. They got us through a pretty rough time. The staff at Children's was wonderful, my son had his last PDL at about 11.5 months and the same day surgery nurses remembered us when we went back for an unrelated surgery 4 years later. I was impressed.

[sahmby28]

I believe the v2 refers to where on the face the birthmark is. My daughter's covers both sides of her face (a specialists dream!) and she is a v1, v2, and v3 on one side and just a v2 and 3 on the other if I recall. It is because it follows the "transgeminal" (no idea how to spell it) nerve, so they track it in sections I guess, similar to the vertebre.

My computer isn't letting me see the pictures. I will post pictures of my daughter later.

My derm didn't do anestesia until 6 months, but she had an MRI under anestesia at 1 month, an eye exam at 2 months and 4 months. She doesn't have glaucoma but is "suspect" Her one eye is visably bigger (only to me and if you look closely), her cornea is a little bigger and she elevated pressures. The timoptic eye drops have really worked. They now use gas instead of IV since she is over 6 months and it has made procedure day 100% better.

[nygirl]

hello---my son has a V2 pws adn is similar to the ones shown...i was wondering if you had pics before and after treatments---i would love to see them!!! thanks so much in advance!!