Breathing Problems with hemangiomas - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-26-2011, 08:13 AM
NevaehsNana NevaehsNana is offline
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Default Breathing Problems with hemangiomas

My granddaughter is 3 weeks old. She has a hemangioma on her chin which extends into her mouth, she also has one on each side of her face near her ears. The one on her chin has sores on it but our main concern right now for her is breathing difficulties. She started having a "croupy' type cry and cough at 2 weeks old, with no other signs of illness, ie:runny nose, fever,etc. She has had a Bronchioscope and CT scan. Several different doctors have different ideas as to what her problem is. I do not believe it is croup do to the fact she has had no other signs of illness. One of the doctors has not totally ruled out Hemangioma. Is there a specific test we should request? She is being treated with steroids to help her breath better. This has been going on for over a week and I am concerned about the steroids she is taking as well as what happens if they stop working.
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Old 01-26-2011, 11:18 AM
tlampley3 tlampley3 is offline
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this sounds similiar to what i went through with my daughter. did the bronchioscope show any internal hemangiomas? is she taking propranolol? did they discuss stridor vs. wheezing sounds with you? is she seeing a ped. derm.?

my daughter also has a "bearded hemangioma" and they found one in the back of her throat with the bronchioscope. she has been taking propranolol since she was 3 weeks old. she has responded very well to it, but around 3 months she started having bouts with wheezing. the first 2 were bad enough to go to the emergency room. after going to several different drs. who all gave different diagnoses, her dermatologist told me that children with reactive airway disorder can't always take propranolol b/c it can cause further airway restriction in children with rad. my daughter has not been diagnosed with "rad," but has been on pulmicort since september. she was doing a nebulizer of it once a day, but since she has started crawling, we have had to increase it to 2x a day. the poor girl wheezes when she crawls! we had to take her off the propranolol for about 4 or 5 days this past fall to get the wheezing under control, but she is doing much better now.

pulmicort is a very low dose "maintenance" steroid. it is meant to prevent further attacks from happening, but will not prevent one already in progress. she also has albuterol (though we haven't had to use it in a long time) to stop attacks once they have started.

i hope you get some answers soon! best wishes and congrats on your new grandbaby!
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  #3  
Old 01-26-2011, 11:21 AM
missy missy is offline
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Hi and welcome!

I know you sent a message to one of our experts, but I would also send one to the Airway Expert. He's at

http://birthmark.org/node/56

Missy
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Old 01-26-2011, 12:53 PM
smurph smurph is offline
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Hi! I don't have any experience with airway hemangiomas but I just wanted to say Hi and wish you luck with finding out more answers. On several occasions, I have read on here about children having airway hemangiomas/breathing issues when they have hemangiomas on their lower lip/chin region. So hopefully some more people will chime in here and share their experiences with you. Hang in there.

Shannon
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  #5  
Old 01-29-2011, 07:26 AM
NevaehsNana NevaehsNana is offline
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They did a bronchioscope the 1st time she was admitted to the hospital but it only showed swelling so they said it was croup. They sent her home but after 24 hours off the steroids they gave her she started weasing or strider (they didn't explain the difference but did call it strider). When we returned with her to the hospital another doctor saw her and said that if it were croup it should have cleared up so, they did a CT scan which showed the cartilidge in the throat narrows. The ENT did not think this was a problem and was not sure why they even told us about it. This was the second ENT who said he wanted to look with a different type of scope if the breathing problem reoccurred. Tonight was the last dose of oral steroids so we will see by Sunday. Hopefully there will be no more problems but I was wondering if others had the same problems with diagnosis. Thanks for all you responses it is nice to know there is a community for us as we start this journey.
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Old 01-31-2011, 05:09 PM
NevaehsNana NevaehsNana is offline
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Breathing issues are back! We are taking her to her pediatrician because the hospital wants her to go back to ER which is just racking up the bills! We are going to request an MRI of her whole body. Not sure if that is what is needed for this or not. I never heard back from the breathing specialist, but have read it should be done if there are more than three H present and there are definitely more than three that we can see.
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Old 02-01-2011, 12:50 AM
missy missy is offline
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Best of luck with that! We'll be keeping her in our thoughts. I think it's best to make sure you ask for an MRI "with contrast," but I'm not sure. Better to err on the side of caution with that.

Missy
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Old 02-01-2011, 01:21 PM
tlampley3 tlampley3 is offline
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sorry to hear that! hang in there! i know how frustrating this all is for ALL of you! my daughter is having breathing problems again too, so we are off the propranolol for now. hopefully things will clear up soon and we can go back on or find another way to treat her. keep us posted!
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Old 02-05-2011, 03:21 AM
blessedmom10 blessedmom10 is offline
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Hello, my now 6 month old son was dx at 2 weeks old with Hemangiomas 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 MRI (neck MRI ordered but at that age they can't help but get a lot of the baby in the picture) and bronchscopy. His airway was at least 50% blocked and experienced stridor with cry (like croup) 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 at 4 weeks. 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 proprananol 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. We had a great pediatrician and pedi ENT that caught this early and started on the steriods to get the swelling down and then keep it down with the Proprananol. You could tell for sure what was going on with the MRI (my ENT told me) and with the bronchoscopy. I have heard stories where this was thought to be croup and medicines were delayed. That lead to increase growth and complications. I wish I had more infor to tell you, however I found there is NOT much info out there. My ENT consulted several others around the area just to get a feel for what everyone else was doing b/c it is not something they deal with routinely. My son got the steriods and then the 2mg/kg/in 3 divided doses a day and we have seen little if any growth since.

I pray you get a clear path for your little ones care soon. I know you are working very hard to do the best for her.
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Old 02-14-2011, 05:19 PM
NevaehsNana NevaehsNana is offline
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We are so Thankful we took her to Seattle Children's Hospital. Without looking at her the doctor knew it was a Subglottic airway H. They confirmed it with a scope they were able to do in the office. Then got her admitted to run several other tests to make sure she didn't have other problems associated with what they dx her with called P.H.A.C.E.S. She has no other problems which I Thank God for! She has started taking Propranalol and is being weaned off the steroids. The first thing we noticed was that her cry went back to normal which we wondered if she would always sound like a little barking seal, which on the steroids alone you could still hear. After only a day we have noticed a little bit of break up on her chin and the ones on the side of her face which were a little raised are now flat. Thanks for everyone's responses! I will keep you updated on her progress and gets some pictures up soon.
Thanks!
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