Success Stories with Oral Steriods? - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-29-2008, 04:12 PM
rio rio is offline
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Default Success Stories with Oral Steriods?

Hi- I'm new here. I have an 11 week old daughter with a deep H between her eye and nose. The dr. wants to wait and see but thinks she will probably have to be treated with oral steriods soon because he thinks it will block her vision.
I've read many horror stories of side effects of the oral steriods. Is there anyone out there whose child did not have the negative side effects and had success with the treatment? I'm looking for hope. I'm so scared to put her on the drug while she's so little.
Thanks for your thoughts and input!
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Old 05-29-2008, 07:14 PM
jgoodman0814 jgoodman0814 is offline
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my 11 month old daughter has a large h on her right shoulder that extends down to her elbow. it got so large and had ulcerations so much that they put her on prednisoloan with another medicine to help her stomach from getting upset, starting in december. it was a large dose at first starting at 3 mls a day. we had heard about all the side effects and were worried too. the first two weeks were miserable. she was so fussy, on top of the ulceration and all the spitting up she did. all she did was cry. we finally made a choice to cut the dosage in half to just 1 and a half mls a day. she seemed to tolerate it better and was less fussy. i will have to say that she was almost sleeping throught the night before we started and once we did start, she got up at least two times a night wanting to eat. they monitored her closley to make sure that she was not getting diabetes or gaining too much weight. once we got into the routine of taking the meds every day at the same time( i stress that part) she was ok. we watched her hemangioma shrivel and no more ulcerations! we took her off the steroids in april decreasing slowly to make sure there was no regrowth, and shes sleeping throught the night now. we go for removal on june 10th. i will have to say one thing about oral steroids. every child reacts differently and even though it was a rough start, they helped us so much in the long run. i have also ready where steroids didnt do any good. i say at least try. especially if it could prevent her from having any vision loss.
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  #3  
Old 05-29-2008, 08:15 PM
nickbar nickbar is offline
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My son was on oral steroids from 6 weeks old until 4 months old. He was weaned properly and had minimal rebound growth. His side effects were mild compared to most stories. It depends on the child and the dose they have to be on. I've written a paper on Oral steroids (and edited/approved by Dr. Levitin) if you are interested email me and I can send it to you via email.

Oral steroids are sometimes a good defense against rapidly growing h. that could cause medical issues... their might be other options too? I would encourage you to get opinions from some of our experts on the home page of this site. Dr. Levitin for example would be a good resource.


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Old 05-30-2008, 01:16 AM
lpm lpm is offline
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I think I'm one of the few that wanted their kid on steroids earlier - I was searching for a doctor to prescribe steroids when my youngest was only a few weeks old, but didn't find a doctor willing to do so until she was 2 months old. I would have preferred a steroid injection - just because it is easier than giving the child liquid medication every day - but no one around here was willing to do so (too close to the eye). She was on oral steroids from 2 months to 5.5 months, first at a dose of 2.8 mg/kg, then increased to 4.2 mg/kg, because the hemangiomas were still growing at the lower dose. She later had a steroid injection at 7.5 months (in CA, we are in PA).


While the steroids did not shrink her hemangiomas, they did temporarily halt the growth. She had the puffy cheeks, but otherwise was fine. Her growth in height was stunted for a very brief time, and the weight - well, we're still working on the weight gain, but all 3 kids are lightweights anyway.

I personally would try the steroids if the hemangioma is growing rapidly. Good luck with whatever you decide to do.
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Old 05-30-2008, 07:45 PM
Sam's Mom Sam's Mom is offline
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I can tell you a story about successful treatment, although I can't say the side effects were easy to manage.

But first the success - Sam was a bit older (7 months) when he was put on steroids for a parotid hemangioma and he was on full dose (2 mg/kg) for about 6 weeks and then weaned for six weeks. They worked wonders to reduce the deep component - it is virtually flat now. So I would say based on what we have seen, we would absolutely do it again.

However, the side effects were tough. I should really say side effect, because he only really had one - he did not sleep. I am only slightly exaggerating.

His naps went out the window - he would nap for 15 minute stretches and only in our arms. At night, he would sleep for at most an hour and a half (usually more like an hour) and then would be up for an hour and a half to two hours. All night. It was awful.

In some ways, we were lucky - he wasn't fussy, didn't have reflux or discomfort that we could see (he was also on Zantac). He gained some weight and got pretty puffy, but that evened out pretty quickly when he started weaning. But it's amazing how much you take sleep for granted when you don't have it. His sleep did get progressively better as he was weaned and after he'd been off entirely for a month or so, was pretty much back to normal.

Good luck!
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Old 05-31-2008, 05:47 AM
rio rio is offline
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Thank you so much for all of your stories and information. We go in to the Dr. again next wednesday and I'm very curious what he will say. I'm leaning towards putting her on the steriods to get it under control now but I've also read that sometimes they grow back and I really wouldn't want to keep putting her on it if she is one of the babies that does get extreme side effects. We'll see what the Dr. says.
I appreciate hearing your experiences.

PS Jessica- good luck on the 10th!!
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  #7  
Old 05-31-2008, 01:03 PM
Rachel06 Rachel06 is offline
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Default oral steroids

Hi, my daughter, Rachel was on steroids - a significant dose - from 4 wks until 11 months - including the wean. She did end up with the "chubby" appearance or moon-face is what some refer to it as. She really just looked like a little plump princess. We did not have the side-effects I hear about with respect to behavior and sleep. Rachel is the only one out of my 3 who slept all night very early and went down without protest at nap time and bed time. She was a very happy little baby - we did use some reflex meds, but really, she just did not complain. She will be 3 in August - hard to believe that was our life for a year. We had significant success with the steroid treatment coupled wtih laser and one excision. I would be more than happy to share my story with you and photos if you like. If you want to share or talk, feel free to e-mail me privately at sherrirfoster@sbcglobal.net.
I wish the best for you and your baby.
Take care
Sherri
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