Preparing for outpatient procedures; Pulse Dye Laser

[hayleyvt]

So, I am not sure if this is considered special needs....but my daughter was born with a significant port wine stain birthmark on her face. SHe is now almost 4 years old and we have decided to go ahead and have a laser treatment done. Children do not need to be under anesthesia for this procedure, as it is not "very" painful, but it can be uncomfortable, like a rubberband snap. We chose to put DD under anesthesia because her birthmark is extensive and over both of her eyelids. We were also very concerned about how scarey this would be for her, and how long she could hold still while it is done. Many parents choose to start procedures when their babies are only 8 weeks old, but we felt that it was too risky at such a young age especially for a non-emergency procedure. I am looking for information from other parents who have had children under anesthesia or have gone through laser treatments, as I am not quite sure what to expect....other than the info given by the doctors. Have your LO's had reactions to anesthesia? Was there anything that really helped them emotionally before/during/after the procedure? ALso, we are about an 1.5 hours from the hospital....do you think it would be ok to drive right home afterwards, or should we stick around and get a hotel room?
Thanks to all the mamas in advance.

[CarrieMF]

How long of a procedure is it? If it isn't that long I"d look into sedation instead of general. We've sedated one of my girls a few times for her cardiology appointments because she wouldn't sit still. they needed her to lay down for 20-30minutes for the US part. she was always out for 30-40minutes. After she woke up they wanted us to stay for at least 20 minutes after she was awake to make sure she was mostly woken up. The 1 time she could walk but staggered really badly & fell down a couple of times.

We had a 3 hour drive & they would only let us go if one of us sat in the back with her to watch her. They would have preferred us staying.

[hayleyvt]

The procedure varies dependent on how extensive the birthmark.....that said, they have not given us a specific time, but said it should take less than an hour. The reason she was to go under general was because to laser her eyelids, they need to put eye shields on, and I didn't want her to be awake during that.....it was also recommended to us. But certainly it is something to consider....I will ask the doctor if having her in a twilight state would work as well (I know they said this was recommended if she did not have her eyes done...not sure if they would do it with her eyes)

I will be receiving our packet from the doctor this week with the specifics....to be honest, I feel like we still don't know enough about what is going to happen. I am especially concerned about DD's comfort and the traumatizing affects of being awake during this process...and felt like general anesthesia was the best option.....but I do have options to consider. Oh and does anyone know how long you need to fast before being put under? They just gave us the time for the procedure and it is at 12:00 ......I was hoping that we could wake her up for a midnight snack or early morning snack....I am sure I will find this out soon.....oh, I am just nervous all the way around. I can't believe they would schedule a child's procedure so late if they needed to fast.

[CarrieMF]

She'll need to fast from around midnight on. If you gave her a midnight snack that'd be fine. They probably couldn't schedule the procedure earlier without making it another date.

If they sedate her she won't be awake.

[hayleyvt]

Thanks for the reply. I just got off the phone with the nurse and she can eat 8 hours before the procedure...so, 4 am, and can have clear liquids up to 3 hours before the procedure. They will be sending me a sheet with all the clear liquids that are acceptable, but I think that popsicles and jello are included...if so, she would be pretty excited to have something like that for breakfast

Oh and yes, the schedule for this laser is very difficult, they have to bring it to the OR for all the children's procedures that require anesthesia.....it happens only once a month, so we are going to hold on to this appointment and deal with the issues (fasting) as they come. Thanks for the info mamas

[2boyzmama]

My son has been sedated and under general anesthesia a few times. There's a few things you can do to put you both more at ease.

Ask if the hospital has a Child Life dept. Most do, and they will be able to walk your daughter through the procedure from check in, pre-op, the OR, and post-op. They will ler her see an OR, explain what will happen, tell her the names of anything she wants to know, etc. They will also be there during pre-op to help distract her, help her through any needles, etc. They have special dolls and bears that they can do procedures on. Often a child is allowed to take a special toy with them into the OR (it's taken away when the child is asleep and given back before the child wakes up, so she thinks it was with her the whole time).

We have had good and bad experiences with drugs. Sometimes an oral sedative is given to a child to calm them before any of the "scary" stuff happens (the IV, the anesthesia mask, etc) My son had chloral hydrate and reacted poorly to it when coming out of the sedation (screaming as if in horrible gastric pain). From then on he's had versed and it worked like a charm!!! WONDERFUL drug, Versed! Valium is another one that can be used in low doses to calm/partially sedate a child.

If she has to have a blood draw or an IV and will be awake during it, you can ask for EMLA cream. It is a numbing cream that has to be put on ab hour before the stick but is very effective. You have to ask ahead of time in most places though (and your report time might be earlier then).

Some places offer flavored gas, if so you should let your daughter pick the flavor. (my son was licking the inside of the mask before one of his surgeries, LOL!)

Find out whether you are allowed back in post-anesthesia so you can be there when she first wakes up. One hospital my son goes to allows parents back, one hospital does not. Sometimes that is negotiable, so don't be afraid to ask.

Depending on how she handles the anesthesia, she certainly could come home the same day and have no issues. She might just sleep a lot, then wake up the next morning as if nothing happened. My son has always stayed for 23 hours because of underlying medical issues. You should be prepared to stay overnight just in case (have clothes, snacks, etc).

Good luck!!!!

[hayleyvt]

I will be asking them about all those drugs and the cream as well. Thank you for such valuable info. And love the flavored gas....that would be neat to have. We are having her procedure done at Dartmouth in NH, and they have a great Children's program, CHAD for pain free procedures....not sure if they will show DD through OR first or not. I will definitely bring her blanket and doll, and hopefully DH will be able to accompany her while they get started....I am very pregnant and emotional, so even if they let me come in, I am not sure I would be much help...I know that DH will provide lots of comfort and cuddles. I will be out in the waiting room trying to stay calm and patient and worrying the whole time.

[Zevy]

My son has been getting those laser treatments since he was 2 months old. He is now 2.

It really isn't that bad. The procedure itself is VERY quick. The worst part is not eating before hand, and if your little one feels ill afterwards. Only once did my son feel sick: the rest of the time he was just starving. We had to stay about an hour after the procedure just to make sure everything was ok...he usually ate popsicles. The rest of the day he was fine.

When I was pregnant, they would not let me back with him, so I doubt you can go.

Something to keep in mind is the few weeks after: the area will be VERY VERY red and you will be given creams to keep on it. You'll want to stay out of the sun for the first few days. When you do go out, you may get comments from people. It will take about 1-1.5 weeks to fade and you'll want to keep an eye out for crusting over or excessive swelling.

PM me if you have any questions. I've been doing this for two years, so its old hat to me.

[hayleyvt]

I so very very rarely meet another parent going through laser treatment, and I am glad you posted I saw that you are in Boston.....Do you bring your LO to Dr. Liang? We loved her, but our insurance did not cover it....We were really lucky to find Dr.Pace at Dartmouth, and must say that if we did not like Dartmouth we were willing to pay cash for Boston Childrens hospital. We have been going to ped.derm. since she was born, and have met only 2 other parents of children with PWS, both of which started treatment at 2 months. We are out of the norm to wait this long to start treatment, but are very ready to get started. We will be pulling her out of school for the rest of the week after her treatment, and possibly the week after, dependent on her recovery. I am also due one week after her procedure, and I am 99% sure that I will not be allowed in the room with her because of this. I have to tell myself that this is not surgery, that it should be quick and relatively painless, but since it is new, I am a worrying mess about the whole thing. I knew that she would be red afterwards, but I guess I am not clear about when we will start seeing results....I understand that some children need 2, 5, 10, 20 procedures before seeing results....we are hoping that once our first procedure is done, that we will have a much better understanding about how our DD will heal and hopefully will not have to go through too many treatments. We will see soon enough.

[Zevy]

Yes we DO see Dr. Liang. She is lovely. Our next treatment is actually probably going to be our last: she thinks she has gone as far as she can and said should could recommend someone with a more powerful laser, but I don't think we'll do that. We're pretty pleased with how things went.

How many treatments depends on how severe the stain is. We have had 9 treatments. They tell you that you can have it done every 4 weeks, but honestly...with the schedule it usually ended up being every 8-10 weeks. And they recommend skipping it during the summer time to avoid the sun. So it ends up taking much longer than you would have thought. 9 treatments took 2 years. Our son's stain was not very large (about 3 inches by 3 inches starting in the corner of his eye and extending out towards his ear).

I'll warn you: it looks pretty bad after the treatment. It doesn't hurt, but looks terrible for awhile.

You definitely won't be allowed in the room. I was pregnant during one of my son's treatments and they didn't want me anywhere near the anesthesia. So I waited outside. I was allowed back in as soon as it was done (and again, the procedure is REALLY quick!).

Good luck!

[hayleyvt]

hmmmm, I had a feeling that being preggo would get me kicked out of the OR. We figured that if we got in this spring, we could resume treatment in the fall....I am not sure how I could keep her out of the sun over the summer, so, we have counted that out. Her birthmark looks more like an Angel's Kiss (middle of forehead), and comes down onto her nose and a bit under it and on her lip (tiny tiny bit)...she also has two patches over her eyes....so not huge, but, big enough that we figured it might take a bit longer than one spot. Our hopes are that it will be faded significantly by the time she hits kindergarten.
I am so happy that you all have had a good experience with Dr.Liang, and hurray for no more treatments! The good thing about these lasers, is that there is always advancements and by the time our LO's are a bit older, they may have an even more successful treatment. I could not imagine some of the old methods of "removing" birthmarks, and am so thankful that our LO was born in this decade......and having a relatively non-invasive procedure.

[hayleyvt]

I just wanted to update and say that everything went well at the hospital today!

It was much more calm and not traumatic at all. DD got to decorate her own mask with princess stickers, and it smelled like strawberries They blew bubbles and we popped them with fish finger puppets while she wore her special "scuba" mask as we pretended to be under the water. She was having a blast, and laughing and playing, then went right off to sleep. The procedure only took 20 minutes, and then another 20 minutes to wake up. There were no tears or issues with waking up...and she was pretty excited to have yet another popsicle today.

Oh, I was allowed in the room with her, and she ended up sitting on DH's lap while I popped bubbles and played with her.
Her face is red and splotchy, but it is fading all ready. I was surprised at how it looked...more like magic marker dots across her birthmark. I guess I expected to be more of a uniform dark red. She is doing great and quite a happy girl today.
Thank you again for all the helpful info mamas!!!

[Landover]

Yeah! I am late finding this, but my DS had one laser treatment done last year (he has a vascular anomaly like a PWS but more diffuse - think broken capillaries all over his cheeks). Anyway, it went really well, and you know don't have any need for my suggestions!!

I am so glad things went well!!

[hayleyvt]

Yeah! I am late finding this, but my DS had one laser treatment done last year (he has a vascular anomaly like a PWS but more diffuse - think broken capillaries all over his cheeks). Anyway, it went really well, and you know don't have any need for my suggestions!!

I am so glad things went well!!

Thanks for chiming in Does your DS need any more treatments? I find it so frustrating that there is no way of knowing how many treatments DD will need. She is still pretty red today, and her eyes are a bit swollen (more than yesterday). I have a feeling that we will keep her home from preschool all week. I also have no idea how long it will take for the marks from the laser to go away. At least she doesn't seam to be in pain or even uncomfortable. I am thankful that it did go so smoothly.