Basic information help? - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #11  
Old 06-08-2010, 05:06 PM
concernedmama concernedmama is offline
Junior Member
 
Join Date: May 2010
Posts: 23
Default

Sara
I think I would have started on the Timolol ointment. Someone just posted photos of before and after. Right now you are the infancy stages and I think you might have success. But if not you haven't done any harm to her. Propanol probably would have been my next step, but I think we have missed our window on that one. I didn't want to do the lasers if that had to put her under general anesthesia each time (sometimes you need to do more than one) and was never given the option of timolol ointment. If you want to go the ointment route and are having problems getting someone to give it to you I would contact Dr. Waner or Dr. Levitin. They may even be able to give your a referral for someone in your area. I emailed both over the weekend with photos of the h and questions. I heard back from both of them by Monday morning. Dr Waner is in NY and Levitin does the live chats and is listed on this website. Also Corinne Barinaua (check spelling) is the family advocate on this site and has been wonderful. She is located about 30 mins from my home. She can help you if you need/want referral and need insurance help. I hope this helps you....I'm currently trying to weigh all the options right now. I won't do anything until September when she turns 2 because she won't keep a hat on and it's important to keep the scar(if we go the surgery route) out of the sun. That and I want to see how much more hair will grow in between now and then. Honestly, I think I would try the ointment because it's topical with little side effects.....Something not too invasive but better than the wait and see approach. propanol is an oral med that you need to have your child have an EKG before hand to make sure that your child's heart can handle it. Then they have you stay and be hooked up to a monitor as they deliver the first dose. Sorta scary but I think they do it more as a precaution than anything else. If you don't mind my asking, where are you located?
Reply With Quote
  #12  
Old 06-08-2010, 05:54 PM
snappysara snappysara is offline
Junior Member
 
Join Date: Jun 2010
Posts: 5
Default

Quote:
Originally Posted by newmom View Post
snappysara - I hate to say it, but you likely won't get much help from doctors in Ontario. We saw a pediatrician who referred us to the Hemagioma clinic at McMaster in Hamilton. The pediatrician told us it would go away and I think she referred us more for my sake than anything. I also researched on my own and went to see a doctor at Sick Kids. In the meantime, I contacted many doctors in the US via e-mail to get their opinion. All of them suggested laser treatment. Not wanting to wait any more, we set off to NYC to start laser treatment. We had our first treatment when my daughter was 4 months old. One week after the first treatment, we had our appointment at Sick Kids. The doctor did not advocate laser treatment at all - basically told us that wait and see was the way to go. The hospital does do laser treatment, but they put all babies to sleep for it and they've only been doing it for a month at the time I saw them - not exactly the best scenario. So we left in tears, second guessing our decision to do the laser treatment. We continued on with it. When we finally had our appt at McMaster, we had 4 laser treatments under our belt (we travel to NYC every 2 weeks). Again at Mac, we were made to feel like bad people for doing what we were doing. And again, I left in tears. I finally asked the doctor at Mac why it was so difficult to get laser treatment in Canada and she explained that it all had to do with government funding - the laser is expensive to purchase and maintain. So we continued on with our journey to the US. We have had 8 treatments so far and probably only have 1-2 left according to our doctor. It has been a long process and travelling to NYC every 2 weeks has not been fun. But I feel blessed that we are able to do this for our daughter. Pretty much everything I read on this forum from a Canadian perspective is that all doctors have taken the wait and see approach. I'm not the only one who has had to look outside of our country for help and I probably won't be the last. I hope you have better luck than I did. What I did learn from this process is that you basically have to go in armed with information to your appointment and insist on a course of treatment if you are not comfortable with the wait and see approach. I apologize for the long e-mail, this is only my experience and maybe other Canadians have some good stories to share with you! I am in no way saying the US health system is better than Canada - they each have their pros and cons, but I have definitely witnessed the cons in the Canadian health system in the last 7 months! My theory is that if something can be done, why not do it rather than risk what could happen if left undone - but I'm not a wait and see type of person. Good luck to you in your journey!
I am saddned to read your story, this is not very good news for us parents with a desire to take action. Why have a H clinic in Hamilton if they are just going to send you on your way with no real help? Flying to NYC ect.. sounds very expensive.

Quote:
Originally Posted by mperron View Post
I hate to say it as well, but I'm also very dissapointed with the Canadian doctors as well as they have little knowledge of hemangiomas and treatment. I too went to NYC for tx for my son, which is sad we had to go out of country to seek tx considering the amount of taxes we pay here in Canada. Sorry to dash your hopes about tx in Canada, perhaps there are some good doctors out here in Canada.
I think our physicians need more knowledge about hemangiomas and that they should give parents more options of tx choices other than the wait and see approach. This is a message that needs to get out to physicians. I don't know how, but if anyone has suggestions to getting the message out I'm interested.
I emailed a lot of doctors in the United States to get various opinions. The doctors there have been great in responding to my questions. My son saw Dr. Waner in NYC.
What is tx? (sorry I am new here)
Sorry you had to go so far for treatment also

Quote:
Originally Posted by concernedmama View Post
Sara
I think I would have started on the Timolol ointment. Someone just posted photos of before and after. Right now you are the infancy stages and I think you might have success. But if not you haven't done any harm to her. Propanol probably would have been my next step, but I think we have missed our window on that one. I didn't want to do the lasers if that had to put her under general anesthesia each time (sometimes you need to do more than one) and was never given the option of timolol ointment. If you want to go the ointment route and are having problems getting someone to give it to you I would contact Dr. Waner or Dr. Levitin. They may even be able to give your a referral for someone in your area. I emailed both over the weekend with photos of the h and questions. I heard back from both of them by Monday morning. Dr Waner is in NY and Levitin does the live chats and is listed on this website. Also Corinne Barinaua (check spelling) is the family advocate on this site and has been wonderful. She is located about 30 mins from my home. She can help you if you need/want referral and need insurance help. I hope this helps you....I'm currently trying to weigh all the options right now. I won't do anything until September when she turns 2 because she won't keep a hat on and it's important to keep the scar(if we go the surgery route) out of the sun. That and I want to see how much more hair will grow in between now and then. Honestly, I think I would try the ointment because it's topical with little side effects.....Something not too invasive but better than the wait and see approach. propanol is an oral med that you need to have your child have an EKG before hand to make sure that your child's heart can handle it. Then they have you stay and be hooked up to a monitor as they deliver the first dose. Sorta scary but I think they do it more as a precaution than anything else. If you don't mind my asking, where are you located?
The Timolol is is perscribed by a dermatologist? Or can anyone perscribe it? I am new to all the options and really dont know much...

There are 2 Sara's chatting... lol I am in the Niagara Region.
Reply With Quote
  #13  
Old 06-08-2010, 10:05 PM
mperron mperron is offline
Member
 
Join Date: Feb 2010
Posts: 65
Default

Sorry tx is abbreviated for treatment.
Reply With Quote
  #14  
Old 06-08-2010, 10:47 PM
concernedmama concernedmama is offline
Junior Member
 
Join Date: May 2010
Posts: 23
Default

Sara,
I'm not sure if your pediatrician would do it or not.....you could always try and the worse he/she can say is no. I would then go to a pediatric derm..might be able to get more results. I would respond to the timolol thread. That mother could probably tell you more.
Reply With Quote
  #15  
Old 07-03-2010, 02:52 AM
snappysara snappysara is offline
Junior Member
 
Join Date: Jun 2010
Posts: 5
Default

Well the update is we have an appointment with the ped derm in Hamilton at McMaster. I am hoping we have good luck with a proactive treatment... but am not getting too excited. It isnt till the end of August and DD will be 4 months by then. I just saw on the internet that if surgery were an option before 4 months (bc hers is on the scalp) is best
Reply With Quote
  #16  
Old 07-03-2010, 03:00 PM
sarajustice80 sarajustice80 is offline
Member
 
Join Date: May 2010
Posts: 50
Default

Hey Sara- how's your dd h's? Has it grown? How big is it right now? My dds has grown. She will be 3 months on fri, I am praying that the majority of growth is done and will stop soon. We have done 1 steroid injection and will be doing another one on weds. It helped slow the growth done a little but it seems its back growing. I'm pretty certain that we will have hers removed at 6 months by Dr. Levitin(he is such an awesome and caring man). Where did you read that its best to have it done at 4 months? Dr. Levitin said before 6 months there is a small chance it will grow back. Does your dd have any hair to hide it some? Also where exactly is it? Sounds like we are in a very similar situation.
Reply With Quote
  #17  
Old 07-03-2010, 03:18 PM
sarajustice80 sarajustice80 is offline
Member
 
Join Date: May 2010
Posts: 50
Default

Sara- I sent you a private message.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump