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-   -   When to start laser treatment (http://birthmark.org/board/showthread.php?t=492)

heather 02-03-2004 03:37 PM

When to start laser treatment
 
Hello. My three week old son was born with PWS covering 50% of his right upper eye lid, parts of his right cheek, right side of his nose and upper lip, and chin. We saw a pediatric surgeon who diagnosed my son's PWS as a mild case and stated that we could start laser treatment (if interested) at 1-2 years of age. As my son has no other medical conditions, my question is why would we need to wait a year? From what I have read, the sooner the PWS can be treated, the better. I noticed that infants can be treated safely with laser. We live in a suberb of Detroit, Michigan. Any referrals/ recommendations would be greatly appreciated. Thank you, Heather

cbstover 02-03-2004 04:55 PM

Re:When to start laser treatment
 
We live in Harrison Township (near Mt Clemens). Our son has a PWS on the left side of his face. He started treatments when he was 2months old. Dr Ken Shaheen is in Troy and works out of Beaumont Hospital in Royal Oak - he has been absolutely wonderful with our son. I would be happy to give you more details about our experiences - we have seen many eye Drs, neurologists, dermatologists and plastic surgeons in the area. If it is on his upper eyelid you may have more work ahead of you - he will probably need an MRI after he is 6months old. Good Luck, Carrie

heather 02-03-2004 05:55 PM

Re:When to start laser treatment
 
Thanks Carrie for responding. We live in Grosse Pointe Woods. We went to Children's Hospital to see a plastic surgeon, however, she recommended waiting until he was 1-2 years of age before starting treatment. Is the MRI used to determine potential brain involvement? If so, why do they wait six months? My husband and I work for different hospital systems (St. John and DMC). We have HAP insurance. I am not sure if Dr. Shaheen's practice would accept our insurance, but I am definately interested in the possibility of getting another opinion from him. Thanks for your information. Heather

cbstover 02-03-2004 06:13 PM

Re:When to start laser treatment
 
I also work for St John - I am a nurse practitioner. The MRI can't be done until 6 mo because of development etc. It is done to rule out Sturge-Webber Syndrome. He will also need to see an opthomologist in the next few months and regularly to rule out glaucoma. I know this is all very overwhelming. When our son Jonathan was born we took him to Childrens Hospital, Providence (Dr Forte) and to UofM (Dr Fader), along with Dr Shaheen. We started with Dr Shaheen when I was working at Beaumont. I know Dr Shaheen doesn't take your insurance, but I would check with Dr Forte (he works out of Providence which is owned by St John) and Dr Fader. They are both excellent. Feel free to email me at cbstover@msn.com and I will give you my phone number if you want more details.

hankbartenbach 02-04-2004 05:13 AM

Re:When to start laser treatment
 
Heather,

Some doctors do not like to start laser treatment on infants because either not enough experence with infants, or are not up to the technology to proform on a infant. If you look to the left of this page, under resources, click on Find a physician, then the your state, then find a doctor in your area.

One laser I know of that is safe on infants is a V-Beam Pulse Dye laser. I have used this lase on my PWS that is on my face and does not scare or bruise. I have been doing laser treatment for 14 years off and on and have used four different laser, and this laser is my favorite.
Ask the dermatologist you find if they use this laser or one similar.

I wish you the best of luck and if you have any question please ask if I can not answer it I am sure someone on this website can.

Hank

DannysMom 02-09-2004 06:58 PM

Re:When to start laser treatment
 
Heather,
We live in Howell, MI. Our 20 mo. old son just had his first laser treatment on 1/27. The doctor used the Candela V-Beam laser. The proceedure lasted only 60-90 seconds and we are now waiting to see how effect the proceedure was. Danny had PWS on his left lower eyelid, left cheek, his nose and also on his upper lip. His was also diagnosed as a "mild" PWS; more pink and red discoloration. It took over a year for our pediatrians to finally diagnose it. At first they said, "wait and see". They thought it was "angel kisses" or at worse a "capillary hemangioma" that would eventually go away. Even though he was born with it and it never faded, they never even suggested PWS. They said wait until he is one and if not gone by then go see a specialist. I knew all along that it had to be a PWS I just didn't want to believe it. Danny turned 1 yr in May 03 and I would have seen his ped. dermatologist sooner but he was out of the country all summer so we got into see him in Nov 03 when Danny was 18 mos. In retrospect, I wish I had followed my instinct and had this proceedure done sooner. Our son was not sedated for the treatment because the proceedure it so quick. A topical cream painkiller was provided but he still screamed and cried because he was aware something was happening and didn't like being held down. I think he will need a second treatment because it was so difficult to do the laser work around his eye. If he had been younger I don't think he would have been able to resist as much. My husband and I were with him the entire time and it was tough to watch but 10 min after treatment he seemed fine. I gave him tylenol that day and the next. It looked horrible but the skin was smooth to touch. He did not seem bothered by it. A week later, the skin became dry and red, I have been applying Neosporin + pain relief to it 1-2 times daily to help heal. In two weeks he hasn't once touched it while it heals so it must not be hurting or bothering him.

From my research I have found two pediatric dermatolgoist in Southeast Michigan. Dr. Tor Shwayer with Henry Ford Hospital and Dr. Rassmusen at UofM in Ann Arbor. Dr. Shwayder did Danny's treatment. It was done at the West Bloomfield office. He worked well with Danny and appeard to be very good with children. He also helped us by writing a predetermination letter for our insurance company. Only problem is with scheduling. He only does this prodeedure on the last Tues of each month so if there is a cancellation, you need to wait 30 days to reschedule. Also, it is recommended that the child not have a sun tan on their face. My son tans dark so we needed to get this proceedure done this winter. I found it strange that he didn't take a "before" photo. Not sure if most doctors do. We certainly did on our own and I have taken a photo of Danny's face about every other day to track the healing process.
If you havn't already chkd it out, go to the Candela website. They said their V-Beam can be used on infants as young as 3 weeks old. Talk with a Pediatric Dermatologist to discuss when the "best" age is to have this done. Keep in mind it could take numerous treatments that will also require healing time inbetween so treatments could last longer than a year or two. Age may be a more important factor if you consider this. I too have read that sooner is better. I have seen many before and after photos of infants that look like they are around 6-9mos. old

Hope this post helps.

clairesmum 03-01-2004 09:28 PM

Re:When to start laser treatment
 
Hi Heather,
My daughter is now just 17 mths old with what sounds like a similar b/mark to your son. We started treatment at 6 mths old under GA. Claire has had 4 tx's todate, with lightening of her birthmark. Claire has the Candela V-beam used on her with over 150 zaps. She has never had any problems with GA or recovery of the laser. She has had 2 scars but they have disappeared shortly afterwards.
Your other issue is the glaucoma. Your son may be okay, like Claire, but our opthamologist still insists on 4 mthly checks up to 1yo, and we had another all clear last week with now 6 mthly checks. The other thing is if they are having GA in a hospital, an opthamologist may be able to check pressures while under GA and this will eleviate some trauma of having it done while awake. I haven't had it done myself, but a friend told me it is terrible thing to have happen, they are an adult.

Claire had an MRI at 5wks with the all clear, and our dermatologist (who seems to be on the ball about all b/mark issues) said this should be sufficient. Claire has not shown any developmental issues (actually the complete opposite - she doesn't stop) and has not had any seizures.

I hope this helps and you are able to push for early treatment. It is the best while the skin is so young, and not been exposed to the sun and all the harshness of the world.

All the best and if you would like to see photos you can email me bcparker@dodo.com.au
Catherine (claire's mum - facial pws 17mo)

AmyEB 03-16-2004 04:09 AM

Re:When to start laser treatment
 
Our daughter (almost 3 mos now) has PWS on many areas of her body. She has had the MRI and glaucoma checks already and all is clear. We have been seeing the dermatologists at U of Michigan and they recommend doing the pulse-dye laser txmt when she is 4 mos old. They do many of these treatments for infants with PWS so for us the question is not when to start treatment, but rather what areas to treat at this time. The face is a given, but she also has a lot on her chest, belly, arm, and a little on the back and leg. We were wondering if the parents of children who have had the laser treatment done could give advice. Our thought is to do it all since she will already be there and be under general anesthesia, but we aren't sure if that is too much for her at one time b/c of length of time under the anesthesia and after pain. Dr. Orringer kind of left it up to us and said he'd do as much as we want. We also thought to do only areas visible with normal clothing on but I'm sure eventually she will want to have it done on other areas anyway. We would appreciate any thoughts from those with experience!

cbstover 03-18-2004 05:21 PM

Re:When to start laser treatment
 
My son has had several of his 23 laser surgeries done by Dr Fader at UofM, the staff there is great. We have always used GA and he has never complained of pain afterward. It always looks terrible, and he has had a couple areas of small blisters which we used aloe on, but never any pain. So I would say if you are doing GA, you may as well do as many areas as you can.

howard 04-17-2004 05:56 AM

Re:When to start laser treatment
 
Hi there! My name is Susan and I live in Montreal with my husband and 5 yr old son who has a port wine stain on his upper left cheek and side of left eye that extends in spots to the side of his head. Anyway, I was at the doctor's office today for a problem that I am having, and in the waiting room was this magazine that spoke of ct scans in infants who have birthmarks on their faces and heads. Anyways, my son had a ct scan done when he was less than 18 months old, and so I became concerned. I read on. Apparentley, this treatment is perhaps detrimental later to their cognitive development. So my son is in trouble. Although it does not bother me that he will not become a surgeon when he grows up, the idea that he may not be smart nevertheless irks me. Read all about this Swedish study and their recent findings at bmj.bmjjournals.com/cgi/content/full/328/7430/19.


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