Airway H-is it too early to wean? Anyone else out there with internal H?

blessedmom10 · #1 12-27-2010, 03:09 AM

My 4 mo old son was dx at 2 weeks with Hemangioma on his tongue, front of his neck, lower inner lip (at gum line) and lower lip. At 4 weeks also confirmed subglottic airway H and parotid gland H with CT and bronchscopy. His airway was at least 50% blocked and experienced stridor with cry and sounded like he needed to be suctioned at rest. We did one round of steriods and began propananol while in hospital for the bronchoscopy. He sounded much better even that first day. Repeat bronchoscopy showed H decreased to about 25% (4 weeks later). His breathing has been great every since. No more stridor or wet sounds with breathing. The only thing we can see now while on the propananol is what looks like a white raised white scar on his lower lip and some purple color inside his mouth along the bottom gum line . Love to attach a photo so I could get some feedback, however it says the file is too big. How do you attach a photo?? The doctor did not want to increase his P dose with this last weight gain as a way to begin weaning him off his med. I am nervous about weaning at 4 months. Is this too early? I could understand if were just on his lip but it's his airway. I don't want to start weaning and then he starts having trouble with breathing again so we play catch up with his meds or have to do more steroids. He also has some frontal bossing (forehead mis shaped), could this have anything to do with Hemangiomas?? Could he have one in his head causing this??-UGH, I worry everything is a new symptom of something we are missing.

It has been very difficult not know what is coming next. How will I know when involution is beginning? Is there anything else I should know? I feel like I should be asking more questions, but even the doctors tell me this is rare and not much info. If there is anyone out there who has had this (airway or internal H) it would sure be nice to know your story.

missy · #2 12-27-2010, 12:03 PM

Hi and welcome!

If you are not able to attach a photo, email it to contact@birthmark.org and I will attach it for you.

Other parents with experience will post soon... hang in there!

Missy

missy · #3 12-27-2010, 02:25 PM

Here ya go!!

siobhan · #4 12-27-2010, 09:38 PM

Hi,

No experience with internal H but my daughter is 4 months and we will start to wean off propranolol in a month or 2. She has H on her forehead. I know there is an area on this site that you can contact specialists for their opinion. Perhaps this would but you mind at ease. My dr (Dr Blei in NY) said if there is any evidence that the H is rebounding we will stop the weaning. Do you have any such plans with dr to monitor the H's to ensure they arenit growing again?
I know the process is terrifying. Good luck with everything. Your son is gorgeous!

tlampley3 · #5 01-07-2011, 01:57 AM

my daughter (almost 9 months old) has a large segmental hemangioma on the side of her head, small ones on the corners of her bottom lips, a fairly large bearded hemangioma, and one on the back of her tongue. luckily, she has been on medication (propranolol and timolol) since she was about 3 weeks old, so they are very faint now and never became raised. she takes 1.6 mL of propranolol 3x a day and we are working up to 2 mL. her doctor wants her to stay on it until she is at least a year old. he did say that when we try to wean her, if things start growing again, we can always go back on the medication.

tlampley3 · #6 01-07-2011, 01:58 AM

oh, i can post pics too if someone tells me how. do i have to email missy?

tlampley3 · #7 01-07-2011, 02:00 AM

also, we had an MRI done to rule out any internal hemangiomas in her head. if you are worried, you may want to look into that. they do have to put them to sleep to do it though.

missy · #8 01-07-2011, 11:29 AM

Here ya go!!

They were in order in email, I think, but I don't know if they are any longer!

Missy

tlampley3 · #9 01-07-2011, 12:15 PM

thanks! the first one is about 3 weeks old, before we started propranolol. the one on the side of her head extended down the back of her head and neck also. i am AMAZED at how well she has responded to propranolol! :-)

blessedmom10 · #10 01-07-2011, 02:34 PM

thanks for sharing your story. I am going to ask to stay on this dose awhile longer, I think his lip is growing a little, se doc next week.

Blessed Mom 10