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Search: Posts Made By: tlampley3
Forum: Help and Resources for Hemangiomas 05-28-2012, 11:10 AM
Replies: 6
Views: 7
Posted By tlampley3
My daughter turned 2 in April. She has been on...

My daughter turned 2 in April. She has been on Propanolol since 3 weeks of age. She has multiple hemangiomas. We have tried several times to wean, but no luck yet. The longest we have been off is...
Forum: Help and Resources for Hemangiomas 06-01-2011, 12:10 PM
Replies: 6
Views: 7
Posted By tlampley3
My daughter also has multiple hemangiomas. Our...

My daughter also has multiple hemangiomas. Our first pediatrician told us there was nothing we could do, and not to worry about it. He never even mentioned the possibility of internal hemangiomas! ...
Forum: Help and Resources for Hemangiomas 05-27-2011, 03:41 AM
Replies: 5
Views: 6
Posted By tlampley3
my daughter actually has several! the largest...

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...
Forum: Help and Resources for Hemangiomas 05-27-2011, 01:39 AM
Replies: 5
Views: 6
Posted By tlampley3
my daughter has a subglottic h as well. i would...

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...
Forum: Help and Resources for Hemangiomas 05-04-2011, 12:40 AM
Replies: 3
Views: 4
Posted By tlampley3
she is still taking propranolol and that has kept...

she is still taking propranolol and that has kept it at bay. we were lucky we started so early (3 weeks), so it never became raised. you can still see faint traces of it, mostly down the back of...
Forum: Help and Resources for Hemangiomas 05-03-2011, 02:42 AM
Replies: 3
Views: 4
Posted By tlampley3
daughter's hair isn't growing where hemangioma was

my daughter has a fairly large segmental hemangioma on the side of her head. although propranolol has practically made it disappear, her hair is growing VERY slowly in this area. now that she is...
Forum: Help and Resources for Hemangiomas 04-28-2011, 02:09 AM
Replies: 4
Views: 5
Posted By tlampley3
What age did you wean from Propranolol?

My daughter has some pretty extensive hemangiomas and has been on Propranolol since she was 3 weeks old. She turned 1 on April 13th and we attempted weaning, but saw slight rebound, so we are back...
Forum: Help and Resources for Hemangiomas 02-25-2011, 01:54 PM
Replies: 10
Views: 11
Posted By tlampley3
my dr. prescribed timolol drops (yes, they are...

my dr. prescribed timolol drops (yes, they are eye drops for glaucoma, i believe.) for the side of my daughter's head and a gel solution for her lip. in my experience the lip gel didn't stay on...
Forum: Help and Resources for Hemangiomas 02-22-2011, 05:18 PM
Replies: 15
Views: 16
Posted By tlampley3
my daughter was diagnosed with PHACES after an...

my daughter was diagnosed with PHACES after an MRI, bronchioscope, EKG, and another test of her heart (can't think of the name right now. lol). She was diagnosed b/c the tests found a tiny hole in...
Forum: Help and Resources for Hemangiomas 02-15-2011, 02:28 AM
Replies: 15
Views: 16
Posted By tlampley3
i am so glad you got some answers and that she is...

i am so glad you got some answers and that she is doing well! my daughter was also dx with phaces, but has no major issues so far. keep us posted!
Forum: Help and Resources for Hemangiomas 02-07-2011, 01:33 PM
Replies: 3
Views: 4
Posted By tlampley3
you didn't do anything "wrong!" i...

you didn't do anything "wrong!" i agree that you should seek a vascular anomalies specialist to rule out any internal hemangiomas. my daughter has several as well, and they did find one on the back...
Forum: Help and Resources for Hemangiomas 02-01-2011, 01:21 PM
Replies: 15
Views: 16
Posted By tlampley3
sorry to hear that! hang in there! i know how...

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...
Forum: Help and Resources for Hemangiomas 01-26-2011, 11:18 AM
Replies: 15
Views: 16
Posted By tlampley3
this sounds similiar to what i went through with...

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?...
Forum: Help and Resources for Hemangiomas 01-07-2011, 12:15 PM
Replies: 10
Views: 11
Posted By tlampley3
thanks! the first one is about 3 weeks old,...

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...
Forum: Help and Resources for Hemangiomas 01-07-2011, 02:00 AM
Replies: 10
Views: 11
Posted By tlampley3
also, we had an MRI done to rule out any internal...

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. :(
Forum: Help and Resources for Hemangiomas 01-07-2011, 01:58 AM
Replies: 10
Views: 11
Posted By tlampley3
oh, i can post pics too if someone tells me how. ...

oh, i can post pics too if someone tells me how. do i have to email missy?
Forum: Help and Resources for Hemangiomas 01-07-2011, 01:57 AM
Replies: 10
Views: 11
Posted By tlampley3
my daughter (almost 9 months old) has a large...

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...
Forum: Help and Resources for Hemangiomas 11-16-2010, 09:28 AM
Replies: 8
Views: 9
Posted By tlampley3
we started it at 3 weeks of age and have seen...

we started it at 3 weeks of age and have seen vast improvement. our daughter was not hospitalized either and has done just great. we were told to watch for lethargy and to feed with EVERY dose and...
Forum: Help and Resources for Hemangiomas 10-13-2010, 05:02 AM
Replies: 11
Views: 12
Posted By tlampley3
My daughter is 6 months old and takes .75 3x a...

My daughter is 6 months old and takes .75 3x a day. She weighs 19 lbs. She has done pretty well. We started at 3 weeks of age with .02 and have gradually increased as she has gained weight. We...
Forum: Help and Resources for Hemangiomas 09-25-2010, 04:45 PM
Replies: 7
Views: 8
Posted By tlampley3
Livy is doing much better this past week. She is...

Livy is doing much better this past week. She is down to 1 breathing treatment of Pulmicort (maintenance steroid) per day. She is back on her full dose of Propranolol and seems to be tolerating it...
Forum: Help and Resources for Hemangiomas 09-22-2010, 03:44 AM
Replies: 7
Views: 8
Posted By tlampley3
my daughter has a segmental hemangioma on the...

my daughter has a segmental hemangioma on the side of her head, a bearded hemangioma, small ones on the bottom corners of her lips and behind both ears. they also discovered one on the back of her...
Forum: Help and Resources for Hemangiomas 09-21-2010, 02:21 AM
Replies: 28
Views: 29
Posted By tlampley3
I'm so sorry to hear about your daughter. It...

I'm so sorry to hear about your daughter. It sounds like you have had a tough road, but I'm glad you are doing your best to keep a positive outlook and it is great news that the doctors think they...
Forum: Help and Resources for Hemangiomas 09-20-2010, 09:18 PM
Replies: 28
Views: 29
Posted By tlampley3
I don't have any experience with this, I just...

I don't have any experience with this, I just wanted to offer some encouragement and tell you to hang in there! I'm sure your family has been through a lot at this point. I will keep you in my...
Forum: Help and Resources for Hemangiomas 09-18-2010, 05:37 AM
Replies: 2
Views: 3
Posted By tlampley3
Thank you. She seems much better today. ...

Thank you. She seems much better today. Actually, she has been her normal smilely self through most of this, so I guess that is a good sign. She's a tough little cookie! :-) We are continuing the...
Forum: Help and Resources for Hemangiomas 09-17-2010, 03:36 PM
Replies: 2
Views: 3
Posted By tlampley3
Bronchiolitis/Propranolol use

My daughter has been having a tough time with Bronchiolitis. In the past 2 weeks we have been to the dr. 6 times. She had a steroid shot, a steroid iv, 1 week of oral steroids, and now is on...
Showing results 1 to 25 of 56

 
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