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Search: Posts Made By: lrlt2000
Forum: Help and Resources for Hemangiomas 10-15-2010, 02:48 AM
Replies: 4
Views: 5
Posted By lrlt2000
Yes, spitting up, vomiting, it's all basically a...

Yes, spitting up, vomiting, it's all basically a factor of how bad the reflux is. Mine can't drink, burp or be put down without it forcefully spurting back up. Many times, it's through her nose and...
Forum: Help and Resources for Hemangiomas 10-14-2010, 01:10 AM
Replies: 4
Views: 5
Posted By lrlt2000
Propranolol and Reflux/Gastric upset

My daughter is 12 weeks old and has been on Propranolol for exactly one month. She has preexisting reflux and it's pretty bad--I can rarely leave the house! Anyway, I swear it got worse when we...
Forum: Help and Resources for Hemangiomas 10-13-2010, 03:38 PM
Replies: 6
Views: 7
Posted By lrlt2000
Thumbs up I also agree. You are the only one who can...

I also agree. You are the only one who can advocate for your child, unfortunately! Find other resources and do not give up until you are seen, immediately! Time is of the essence with these,...
Forum: Help and Resources for Hemangiomas 10-13-2010, 03:34 PM
Replies: 11
Views: 12
Posted By lrlt2000
The important factor is the mg *per kg* not...

The important factor is the mg *per kg* not necessarily the amount taken. So, in the calculations above, we're looking at strength of dose, not amount. Even if a child is taking less, she may be...
Forum: Help and Resources for Hemangiomas 10-12-2010, 02:26 AM
Replies: 11
Views: 12
Posted By lrlt2000
And even yours seems to be about 5mg/kg/day...

And even yours seems to be about 5mg/kg/day (unless I'm doing something wrong in my calculation).

ETA: I think yours is 2.5mg/kg/day too! I think I've got it: 2.4ml a day, times the typical mg/mL...
Forum: Help and Resources for Hemangiomas 10-12-2010, 02:22 AM
Replies: 11
Views: 12
Posted By lrlt2000
I *think* that works out to be about...

I *think* that works out to be about 5.3mg/kg/day! Our docs said recommended is 2, but as soon as we upped the dosage after she was reweighed, I immediately saw a difference (as she was gaining...
Forum: Help and Resources for Hemangiomas 10-11-2010, 05:17 PM
Replies: 11
Views: 12
Posted By lrlt2000
Question about Propranolol dosage

I've noticed here on the board that many seem to be taking more than was prescribed to us. I think our doctors said that the recommended dosage is 2mg/kg/day, but when I do the math for some of the...
Forum: Help and Resources for Hemangiomas 10-09-2010, 02:09 PM
Replies: 91
Views: 92
Posted By lrlt2000
Thank you, Pat! Actually, in the last week I've...

Thank you, Pat! Actually, in the last week I've notice more of a deeper area underneath that superficial part. It seems to have gotten bigger in the past week. EEK! I prompted the docs to re-weigh...
Forum: Help and Resources for Hemangiomas 10-09-2010, 02:04 PM
Replies: 46
Views: 47
Posted By lrlt2000
Thank you! We went back to the cardiologist...

Thank you! We went back to the cardiologist yesterday and she indeed weighs 1 lb 11 oz more than she did when they first calculated her dose! She went from .75mL to .85mL. Unfortunately, it seems...
Forum: Help and Resources for Hemangiomas 10-07-2010, 06:00 PM
Replies: 46
Views: 47
Posted By lrlt2000
Sorry, I had to separate the photos because it...

Sorry, I had to separate the photos because it only allows 4 images per post! Here are the post-treatment ones:

Day 16 of...
Forum: Help and Resources for Hemangiomas 10-07-2010, 05:04 PM
Replies: 91
Views: 92
Posted By lrlt2000
Pat, Thanks for posting such detailed accounts...

Pat,

Thanks for posting such detailed accounts of your experience! Our 10 week old daughter has a NTH and we have been on Propranolol for almost 4 weeks now. There is little decrease, but no...
Forum: Help and Resources for Hemangiomas 10-07-2010, 03:56 PM
Replies: 46
Views: 47
Posted By lrlt2000
And I know what you all mean by being "an...

And I know what you all mean by being "an advocate for your children"--I've learned my lesson at other times in my life, with my other two children. So, this time, I was adamant! I did not take no...
Forum: Help and Resources for Hemangiomas 10-07-2010, 03:53 PM
Replies: 46
Views: 47
Posted By lrlt2000
Don't blame yourself, no one knew what the mark...

Don't blame yourself, no one knew what the mark would do and you are getting treatment *now*! As for surgery, I don't think that is a definite--even our specialists say there is no way to tell from...
Forum: Help and Resources for Hemangiomas 10-07-2010, 03:47 PM
Replies: 46
Views: 47
Posted By lrlt2000
OMG so happy I found you all!!!

My daughter is 10 weeks old and started Propranolol on September 13th, at just 6 weeks old. She has a H on the FRONT of her nose and it is just an awful place to have one: can you say "Rudolph"?...
Showing results 1 to 14 of 14

 
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