https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 02 Jun 2026 14:20:03 +0000 https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2198945 Thu, 04 Jun 2015 11:40:25 +0000 anonysquire 2198945@https://boards.hellobee.com/ <p>@Finfan: Thank you :) </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2198942 Thu, 04 Jun 2015 11:38:53 +0000 Finfan 2198942@https://boards.hellobee.com/ <p>@anonysquire: I don't know if this will be helpful, but I was born with a facial PWS and treated three times in the 90's with laser surgery. It is still visible but has faded. I'm considering investigating further treatment for myself after this pregnancy. I'm told the surgeries have come a long way even since then. Hugs to you and your little guy. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2198921 Thu, 04 Jun 2015 11:22:46 +0000 anonysquire 2198921@https://boards.hellobee.com/ <p>Just wanted to update. Pirate has eyedrops for his glaucoma. Also his pws is growing. So I'm thinking they will start the laser procedure in September when we go back to the derm. I think it's cute, but it is getting a little old when everyone asks if Zuma punched him or why I woukd let a baby get sunburnt. Anyways... still no one else with pws?? </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184963 Wed, 20 May 2015 20:28:31 +0000 SleepyMonkey 2184963@https://boards.hellobee.com/ <p>@anonysquire: good luck! Hope its just angel kisses :heart: </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184961 Wed, 20 May 2015 20:24:23 +0000 anonysquire 2184961@https://boards.hellobee.com/ <p>@SleepyMonkey: I'm going to call a doc on that list tomorrow. Thank you!!! If it's an angel kiss then I guess the glaucoma is unrelated? </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184952 Wed, 20 May 2015 20:12:16 +0000 SleepyMonkey 2184952@https://boards.hellobee.com/ <p>soooo the only reason i think you should get a second opinion is because of this forum that i came across while googling for myself...the patterns that the babies have in this thread are so similar to your son's in terms of placement, and they are angel kisses/salmon patches which fade over time. you do have to register to see the pics, but its free. </p> <p><a href="http://birthmark.org/board/showthread.php?t=3395&#038;highlight=salmon+patch" rel="nofollow">http://birthmark.org/board/showthread.php?t=3395&#038;highlight=salmon+patch</a> </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184928 Wed, 20 May 2015 19:48:34 +0000 SleepyMonkey 2184928@https://boards.hellobee.com/ <p>If you are looking for a 2nd opinion, this website has a list of docs by state specializing in birthmarks. </p> <p><a href="http://birthmark.org/node/47" rel="nofollow">http://birthmark.org/node/47</a> </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184919 Wed, 20 May 2015 19:41:45 +0000 78h2o 2184919@https://boards.hellobee.com/ <p>I think with the glaucoma diagnosis being fairly definitive, the marks are likely to be PWS, as my understanding is that they are related. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184908 Wed, 20 May 2015 19:32:36 +0000 catomd00 2184908@https://boards.hellobee.com/ <p>The forehead looks more like an angel kiss to me personally since it has poorly defined border. It's super common. My daughter hAd a pretty big one (similar to @anbanan15) and its faded over time. Shes 15 months and you can only see it now when she gets mad! She's very fair skinned too which probably doesn't help. I'd definitely get a second opinion, though if it were me given that it's on the face and Pws usually get darker over time. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184899 Wed, 20 May 2015 19:14:23 +0000 winniebee 2184899@https://boards.hellobee.com/ <p>@anonysquire: oh I am so sorry to hear this. Those pressures are definitely in the glaucoma range. Does this opthamologist perform surgery on young babies? Could you go to an eye center where someone does do that? It's a very stressful situation but surgery can be very successful. While I am nearsighted and developed cataracts I have not had any issue with glaucoma since my surgery as an infant. My brother had to have 2 surgeries but he is also fine. I can recommend a doctor in Boston but that's really it and I know you are far. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184883 Wed, 20 May 2015 18:59:57 +0000 anonysquire 2184883@https://boards.hellobee.com/ <p>@SleepyMonkey: hmm, I have an appt on Friday with his ped so maybe I can ask her about that. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184881 Wed, 20 May 2015 18:59:27 +0000 anbanan15 2184881@https://boards.hellobee.com/ <p>@anonysquire: She did have a bright red one on her eye lid that completely went away sometime in the first year (I cannot remember when right now! I want to say around 9 mo). </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184880 Wed, 20 May 2015 18:59:23 +0000 anonysquire 2184880@https://boards.hellobee.com/ <p>@anbanan15: oh ya, that isn't noticable. The funny thing is that I thought the stain had gone away until Sunday when my uncle asked of Zuma punched him in the nose. So I guess I've just gotten used to it. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184878 Wed, 20 May 2015 18:58:04 +0000 SleepyMonkey 2184878@https://boards.hellobee.com/ <p>@anonysquire: well we went to a birthmark specialist first. She was referred to by our pedi. She is a doctor at the Vascular Birthmarks Institute. I think officially she is a pediatric hematologist. She referred us to the laser treatment center. The dr that does the laser treatment is a dermatologist that specializes in laser surgery. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184877 Wed, 20 May 2015 18:57:41 +0000 anonysquire 2184877@https://boards.hellobee.com/ <p>@winniebee: right eye was 32 and left was 34. Yes a definite diagnosis. This is the only opthmalogist I could find near me who would take a young baby, so I don't think I can find a 2nd opinion on that :/ </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184872 Wed, 20 May 2015 18:55:44 +0000 anbanan15 2184872@https://boards.hellobee.com/ <p>@anonysquire: That's hard for me to say because we all know it is there. I do think it appears smaller, but I think that is because her head is bigger? if that makes sense. I'm not sure if it is exactly smaller. The left side (in pic) is more pronounced and I can see that more easily day to day. I see the heart outline as almost a shadow on her, not exactly redness, especially in a lot of pics. The entire thing still gets red and more pronounced, like the first pic, when she gets upset or has a fever. This pic is from end of Jan when she was in the hospital. This is pretty much how it looks day to day now. </p> [attach=482/15/nooagw.469x600.image.jpg] https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184863 Wed, 20 May 2015 18:45:47 +0000 winniebee 2184863@https://boards.hellobee.com/ <p>@anonysquire: oh ok! So how were his eye pressures? Is there a definitive glaucoma diagnosis? </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184861 Wed, 20 May 2015 18:44:32 +0000 anonysquire 2184861@https://boards.hellobee.com/ <p>@winniebee: oh sorry if I wasn't clear. We just saw the opthmalogist today and go back for follow up testing June 2nd. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184860 Wed, 20 May 2015 18:43:06 +0000 anonysquire 2184860@https://boards.hellobee.com/ <p>@SleepyMonkey: very interesting! So is your birthmark specialist a dermatologist? Or how did you find him? Thank you again!</p> <p>@anbanan15: so it hasn't faded yet?</p> <p>@hellobeeboston: thank you :) </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184858 Wed, 20 May 2015 18:41:55 +0000 winniebee 2184858@https://boards.hellobee.com/ <p>@anonysquire: I had glaucoma as a baby and so did my brother. We both had goneotomies - mine at 2 months his at 4. I have no idea if there is any relation to the skin issue - it can only be diagnosed by checking eye pressure but the signs are clouded cornea, "cow eye" which is bulging eye, excessive tearig. If there is indeed a concern for this you need to get to a pediatric ophthalmologist immediately - I hate to scare you but June 2 may be too late. If you wait too long he could go blind. Both of my boys were seen by pediatric opthamologiesfs within the first 2 mos of life for early diagnosis and continued to be followed through age 2. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184856 Wed, 20 May 2015 18:39:58 +0000 hellobeeboston 2184856@https://boards.hellobee.com/ <p>@anonysquire: can I just say he is adorable??!! </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184854 Wed, 20 May 2015 18:37:31 +0000 anbanan15 2184854@https://boards.hellobee.com/ <p>@anonysquire: I was going to suggest getting a second opinion. Not only for the laser treatment, but from the pic it looks very similar to something that my DD has, which we were told would fade and not to worry about. My DD's mark gets more pronounced when she gets upset, is heart shaped and bilateral between her eyes. I tried to enlarge a pic, so quality isn't that great. Again, just from the pics they look similar, but things might look different IRL. Best of luck!! Oh this pic is from when she was a few months old. She still has it now at 18 mo.</p> <p>[attach=482/15/noo9mj.600x240.image.jpg] </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184850 Wed, 20 May 2015 18:32:41 +0000 SleepyMonkey 2184850@https://boards.hellobee.com/ <p>@anonysquire: our pediatrician even told us that she wouldn't even recommend that we seek treatment until 6 months. I was so anxious about it that she told me to talk to a birthmark specialist right away and i am glad that i did. The "wait n see" approach is an older way of thinking...the whole "earlier is better" way of thinking is relatively new and a lot of doctors don't know that. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184842 Wed, 20 May 2015 18:27:14 +0000 anonysquire 2184842@https://boards.hellobee.com/ <p>@SleepyMonkey: Thank you! That is helpful! Maybe I will get a 2nd Opinion only b3cause I know they can turn darker as they get older </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184838 Wed, 20 May 2015 18:23:36 +0000 SleepyMonkey 2184838@https://boards.hellobee.com/ <p>@anonysquire: again i am not a dr, but from what i have read and according to the practice that i go to, earlier is better. The doctors that head up this practice are very well known in this field and have done studies on the effectiveness of treatments while young. The reasons for starting earlier: 1) the skin is thinner and laser can penetrate it more easily to target the blood vessels. Basically the pws responds better to the treatment the younger they are 2) surface area is smaller so fewer zaps from the laser 3) they won't remember it...when they get to like 6 months, they will start to remember and will get upset when you go in for treatments 4) when they are older, it is harder to control them and get them to sit still so they have to be sedated under general anesthesia every time. </p> <p>I really don't want to go against your doctors advice because who am i? Just some faceless person on the internet. But i want to share what i have learned while i have gone thru this with my daughter. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184836 Wed, 20 May 2015 18:14:08 +0000 anonysquire 2184836@https://boards.hellobee.com/ <p>@SleepyMonkey: how interesting. Our derm said he wouldn't recomend treating it til he gets older. Maybe because his is lighter? We're just supposed to take weekly pictures in the same lighting until our next appt with him at 4 months old we will be discussing glaucoma treatment with the opt on June 2nd. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184833 Wed, 20 May 2015 18:08:00 +0000 SleepyMonkey 2184833@https://boards.hellobee.com/ <p>I'm sorry :sad: i know how it feels. My daughter's also crossed the midline on her face. Its from the bottom of her nose to her lip. The good thing is that the laser technology that they use to treat pws is amazing. The earlier you start the treatment, if you choose to do that, the better. We have already done several treatments so if you have any questions on it, let me know. </p> <p>I don't know much about glaucoma but there are several Facebook groups that i have joined that are good resources. A lot of people whose kids have pws and other complications from it post on there. I can share those with you too if you are interested. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184829 Wed, 20 May 2015 18:00:06 +0000 anonysquire 2184829@https://boards.hellobee.com/ <p>@SleepyMonkey: we've seen the derm 3 times now and just got home from the opthmalogist. We're sure unfortunately :( </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184827 Wed, 20 May 2015 17:57:12 +0000 SleepyMonkey 2184827@https://boards.hellobee.com/ <p>Are you sure those are port wine stains? They may just be angel kisses...which are bilateral and somewhat symmetrical. Where they are on your sons face are a very common sites for those. </p> <p>I am not a dermatologist but my daughter was born with a pws and i googled the shit out of it. </p> https://boards.hellobee.com/topic/port-wine-stain-and-glaucoma-diagnosis#post-2184821 Wed, 20 May 2015 17:49:14 +0000 anonysquire 2184821@https://boards.hellobee.com/ <p>Has anyone's baby been born with a port wine stain and received a glaucoma diagnosis? Trying to not freak out until we talk about treatment options. Also my sons derm is puzzled that his port wine stain is bilateral and said time will tell us why that is. Basically I'm looking for someone to tell me good outcomes of all of this? Anyone else? </p> <p>I'll include a pic of the stain. It's on his right upper lip, inside the nose, on his whole nose, both eyelids and between the eyebrows. </p> [attach=1857/15/noo7e2.600x600.IMG_20150509_083324.jpg]