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-   -   subglottic H-croupy breathing again (http://birthmark.org/board/showthread.php?t=5342)

blessedmom10 05-26-2011 09:26 PM

subglottic H-croupy breathing again
 
My son is 9months and 28 days old. He was dx with a subglottic hemangioma (also in mouth-lip/gums/tongue and parotid gland) at 4 wks old after croupy sounding cough/cry and discoloration on his lip (which ulcerated-small). Scope showed 50% blockage. He received 1 round of steriods and started Propranolol (2mg/kg/divided over 3 doses per day). After first day of meds croupy sounds were gone. 4 weeks later scope showed only 25 % blockage of airway. Continues on Propranolol--2 days ago started having croupy sounding occasional cough mostly at night when his reflux is worse (tx for that-meds & Elecare--poor wt gain). First night very mild, I even wondered did I really hear that. Last night very obvious croupy sounding cough. My daughter who is 3 and I both have runny nose cough (me bronchitis type)symptoms. My son does not have have a runny nose nor am I able to get anything out when I suction his nose at night when he seems congested some. Takes bottle well. QUESTION: Does my son need any medication at this point to prevent the croupy sounds from getting worse. He has only coughed 3 or 4 times today and the croupy sounds were there but seems like breathing is ok right now. I recently had to reschedule his Propranolol dose 1-2 hours later b/c an early am dose late by oversleeping (he doesnt sleep well and I get about 2-4 hours total a night). Or can I just watch him and wait and see. I am nervous that his hemangioma my not be any bigger, however if it is still 25% blocked and now he has a little cold with some swelling; is that why he is now croupy?? At 10 months his Hemangioma should not be growing, right


tlampley3 05-27-2011 01:39 AM

my daughter has a subglottic h as well. i would go to the dr. and see what he/she thinks the best course of action would be. my daughter has had to do breathing treatments off and on since 4 months of age (she is now 13 months). she had wheezing though, not stridor. i'm guessing stridor must be more of the croupy sound and could be due to slight blockage. both drs. said no propranolol when she is wheezing, as it could make it worse. also, her hemangiomas are still growing, though not rapidly. i know they say most stop growing between 9 months and 1 year, but hers haven't yet. we have tried to wean off propranolol twice, but after about a week at half her usual dose, we have seen slight rebound. anyhow, i think a trip to the dr. may be in order, just to be sure it's a cold and not something more serious. i hope he gets to feeling better soon and that you call get some rest. keep us posted!

blessedmom10 05-27-2011 02:57 AM

Oh thanks so much for responding. I did go to the dr, actually yesterday b/c he is not sleeping worse than usual, so I wanted to make sure all was ok. No ear infection, lungs were clear etc. So I called today and dr said just watch him.

Glad to hear from you. I wondered about weaning him off propranolol like the craniofacial doc wanted to at 6 months when the ENT said not at all until at least a year. I decided that we needed to wait until at least a year before trying any weaning. My ds has never has wheezing, just the stridor (croupy sounds).

Does your daughter has H's anywhere else other than subglottic? If you don't mind sharing. I have not found many people who have this in the airway. Glad to know what others have been through.

Blessedmom 10

tlampley3 05-27-2011 03:41 AM

my daughter actually has several! the largest one is on the side of her head and extends down the back of her neck. she also has 1 on the corner of her lip, on both ears, a small spot behind the ear on opposite side of head, under her chin, and in her throat. she has responded beautifully to propranolol and has been on it since 3 weeks of age. you can barely see them anymore. they look more like bruises than anything. her dermatologist said that because hers were so severe, they would probably take longer to stop growing. i was in the process of trying to wean again, but she had another bout of wheezing and had to go off propranolol for a week. after about 4 days, i started noticing slight changes in her hemangiomas, so we are back on for now. i don't want to complain, because i feel like this drug has literally saved her life, but i sure won't miss waking her up at night to feed her and give her medicine! ;-) i'm sure she won't miss it either!

nickbar 06-01-2011 07:43 PM

any update?

blessedmom10 06-02-2011 12:21 AM

Well, he is still having a cough that is a little croupy esp at night, however it is not any worse. He is still having trouble sleeping, but that has been a problem for 8-9 months! Not sure if GI (that is some) or airway or I even heard Propranolol upsets sleep. We are still in the wait and see mode. I cough/croupy sounds continue
by Friday or worsen I will call doc and tell them ok what's the plan.


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