Shrinking H, airwa obstruction, sleep apnea - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-08-2010, 05:07 AM
cel cel is offline
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Question Shrinking H, airwa obstruction, sleep apnea

My daughter was born with a very large facial H. She is now 5 and although it is involuting slowly it is still not at a stage where the doctors feel it is safe to remove. It runs through her facial nerve and down into her neck causing an compression on her airway. She has severe sleep apnea and we are having no luck with our cpap machine. (shes terriied of it and will sob all night when its on also we are finding it aggrivates her asthma.) I was just wondering if there is anything else we can be doing for her. She is starting kindergarten in September and im worried about sending her when she is consistantly sleep deprived. Are there any shrinking agents that maybe available to help speed things along in the shrinking process or are there any suggestions on positional things we can do while she's sleeping. We see the Vascular clinic in Calgary alberta and also the sleep clinic there. The clinics there is great and very informative but im curious if we have any other options out there that might make things easier on her.
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Old 07-08-2010, 07:18 AM
ongsyen ongsyen is offline
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Hi

You may write to Helen Turnage, address is manager@facialsurgerycenter.com
,Doctor Marcelo hochman from hemangioma treatment organisation may willing to help or advise you.He is a very very nice doctor.
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Old 07-08-2010, 03:03 PM
missy missy is offline
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Cel,

I can't remember... is she a candidate at all for propanolol?

Missy
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Old 07-08-2010, 03:44 PM
cel cel is offline
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Thanks for the fast replies! I was told she was not a candidate because her H is already in the involution phase and that its only used in the growth phases. It has come down alot in size but it hasnt changed any of the airway problems. She had her Tonsils and Adenoids removed in August of last year in hopes that it would at least improve some of the breathing problems by making her airway larger and it didnt do anything for her at all. She typically has about 30 apnea episodes where her oxygen drops or she stops beathing completely in an hour. I just feel like there should be something more out there for her. She has struggled for the last 5 years and its just not fair. We have spent more then 30 thousand dollars travellng for all her surgeries and Mri's and meds and ulcerations and equpiment and we still havent gotten anywhere. I was told that when she hit school age they would attmept to remove things but because the shrinking is so slow they said we may have to wait until she is 12. Im feeling like i cant do this any more and i can only imagine how she feels. Im willing to try just about anything.
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Old 07-08-2010, 05:06 PM
TarynsMom TarynsMom is offline
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My daughter will be 3 in September and we started her on propanolol on Tuesday night. My daughters is also in the involution phase but is also going away SLOWLY. When it was decided to give it to her it was mentioned that it may not help or it might help they weren't sure, because they haven't given it to alot of children where te hemangioma is no longer in the growth phase. I just asked it we could try it.
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Old 07-08-2010, 06:48 PM
tlampley3 tlampley3 is offline
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i am so sorry to hear about your struggles. maybe the propranolol would be worth a try? i know they say it is for growth stages, but it couldn't hurt. my 3mo old daughter has a large segmental hemangioma on her head, as well as a small one on her lip, and a bearded one. we are taking her next weds. to an ENT to do a scope to find out if there is any airway obstruction. did you have to do this with your daughter? our next step after that is MRI. i was just wondering if you did the scope and if so, what your experience was?
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Old 07-08-2010, 07:59 PM
jkmorgan333 jkmorgan333 is offline
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My daughter started propranolol once her hemangiomas were out of the growth phase as well. She started 6 weeks ago when she was 10.5 months old. We've seen pretty good results, and after seeing her dermatologist today he said we would see the best results for the first 2-3 months and then after that it probably wouldn't change due to the phase it's in. She is now 1 (her birthday was yesterday!) and we're expecting to wean her off the propranolol sometime in late August or early September. If there's some re-growth Dr. Levy said he may want to restart the propranolol, but he doesn't expect there to be re-growth. It might be worth asking again for your daughter.

Last edited by jkmorgan333 : 07-08-2010 at 08:04 PM.
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Old 07-09-2010, 03:29 PM
cel cel is offline
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Quote:
Originally Posted by tlampley3 View Post
i am so sorry to hear about your struggles. maybe the propranolol would be worth a try? i know they say it is for growth stages, but it couldn't hurt. my 3mo old daughter has a large segmental hemangioma on her head, as well as a small one on her lip, and a bearded one. we are taking her next weds. to an ENT to do a scope to find out if there is any airway obstruction. did you have to do this with your daughter? our next step after that is MRI. i was just wondering if you did the scope and if so, what your experience was?
We were offered to do a scope but we opted to not put her through it and get the MRI instead. The doctors were really certain that the H had not grown in her airway but instead beside it. The MRI showed that that was infact the case so im glad that we didnt have to scope her.

How do i go about asking to try a med when i've been told no already. Do see if i can find another specialist in Canada? I wont take her back to childrens in Vancouver as they really made a mess of her entire situation. Im just wondering if there is anyone else i can ask for a second opinion that i wont have to travel to go see. Money is extremely tight here since we have be travelling for the last 5 years with my oldest. Our youngest is 2 and she has a metabollic disorder and we are just in the begining phases for travelling with her. Is there anyone out there that might do telehealth appointments or even over the phone consults when they havent actually seen her in person? Where do i even begin to look?
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Old 07-09-2010, 03:49 PM
Laurenbetcher Laurenbetcher is offline
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Are there any organizations like Make a Wish Foundation that could help with the travel expenses?
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Old 07-09-2010, 07:17 PM
cel cel is offline
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Im not sure that Canada does make a wish? I was always under the assumption that they only aided kids with terminal illness. We have however had alot of help from Variety club of Canada and an airline called Hope air. It just gets extremely difficult when you are only allowed to use them twice a year. We tend to travel upwards of 5 times a year. We have done alot of our own fundraising as well but we are on empty. We've made 3 trips so far this year between both my daughters and we have a few more that need to be made but i've had to put off due to money. I thik things would be smoother if I only had one with medical issues.
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