Corticosteroid Side Effects, Propranolol Instead? - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-22-2010, 11:33 PM
jacobs_mom jacobs_mom is offline
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Default Corticosteroid Side Effects, Propranolol Instead?

Hello, I am new to the world of hemangiomas. Here's a little background: My second child, Jacob, who is now 2 months old, has a hemangioma on his nose. We saw a specialist at UCSF about 1 1/2 weeks ago. She felt he needed immediate treatment because of the location of the hemangioma and was debating on whether to put him on corticosteroid or propranolol. She decided to try corticosteroid first because their protocol for using propranolol on babies under 6 months is 2 days hospitalization to monitor side effects. So we did the corticosteroid (2 ml 2x/day) along with Zantac and by day 7 on the steroids, my son's personality had completely changed. He went from being my sweet, very mellow baby who had just started to smile to an enraged baby with roid rage. On that seventh day, he screamed all day long. He also stopped sleeping. Prior to being on meds he was sleeping for 5 hr stretches at night and doing a few 45 - 60 min naps during the day. After starting the meds, he wouldn't sleep for more than 1 hr at night and would only do 15 min naps max. He seemed completely exhausted but it's like the steroids had him so wired he couldn't sleep. Even holding and rocking him all day didn't help. He still screamed like he was enraged and it was, to be honest, very frightening. So now, he is on half the dose of steroids until his next appt and the doctor is thinking that he may need propranolol instead.

I have gone through the forum threads and have seen that many people have had great success with propranolol. But I have so many questions and I am so scared for my baby! Did anyone NOT have good luck with propranolol? Did anyone see their child have such severe side effects on the propranolol that they decided to stop the propranolol altogether? If so, what were the side effects? Is my son's reaction to steroids common? I know that some irritability and sleep disruption is common. But is having "crazy" eyes and thrashing around and screaming all day what they mean by "irritability"? Any advice or input on your child's experience with either corticosteroids and/or propranolol would be very much appreciated!
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Old 06-23-2010, 02:35 PM
missy missy is offline
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I've heard of other people that had that severe of a reaction to steroids. I would never, ever let anyone put him on another steroid.

Most people here will tell you they've had nothing but good luck with propranolol. Few side effects. And nothing like what you've described with the steroids.

Missy
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Old 06-24-2010, 07:38 PM
mperron mperron is offline
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Jacobs mom; I am so saddened to hear your poor little one suffer such negative side effects. From what I've researched propranolol has far fewer side effects than steroids. Of course, their will be people that have had negative side effects from propranolol, but when I spoke to two specialists, one Dr. Waner, and the other a cardiologist, as well as a nurse, they all stated that the drug is 'well-tolerated.' These specialists have treated large numbers of patients with propranolol so I feel I can trust their opinion. Also if the drug is administered to your baby in the hospital, their will be safety measures taken to ensure your babies health which may give you seem peace of mind. My son wasn't admitted into the hospital, and he tolerated the drug fine. Initially I thought he had some stomach discomfort because of the drug, however, it wasn't caused by the drug but propranalol.

I truly feel for you in how hard it must be for you to watch your child in discomfort. Hopefully your appointment is soon with your doctor so you can express your concerns.

Wishing you and your son all the best!
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Old 06-24-2010, 07:40 PM
mperron mperron is offline
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Sorry forgot to mention the stomach discomfort was caused by GERD (reflux)
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Old 06-24-2010, 08:48 PM
jacobs_mom jacobs_mom is offline
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Missy and Mperron: Thank you for your replies. My son is currently on only half the dosage of steroids and he is doing MUCH better. He is definitely more irritable than he was prior to starting the steroids, but he is not screaming and thrashing around all day, and he is able to sleep more. Unfortunately, this dosage is not enough to do anything for the hemangioma but his doctor wanted us to continue giving it to him as a temporary stop gap until our appt next week. I'm really hoping the Propranolol works for him with few side effects. I will keep you updated!
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Old 06-24-2010, 09:54 PM
RsMom RsMom is offline
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I'm sorry you're little boy is having such difficulty with the steroids! Are these oral steroids? I have a 10 week old baby girl and we are using topical steroids and timolol right now. She is a small baby and we are just waiting for her to get a bit older/bigger before starting propranolol (we will probably start when she is 13 weeks). I was really against using any medications at first, but the more I have researched and gotten feedback from people on this forum, the more comfortable I feel about starting propranolol. Hope you have positive results with whatever you end up doing. Good luck!
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Old 06-25-2010, 12:00 AM
missy missy is offline
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Quote:
Originally Posted by jacobs_mom View Post
Missy and Mperron: Thank you for your replies. My son is currently on only half the dosage of steroids and he is doing MUCH better. He is definitely more irritable than he was prior to starting the steroids, but he is not screaming and thrashing around all day, and he is able to sleep more. Unfortunately, this dosage is not enough to do anything for the hemangioma but his doctor wanted us to continue giving it to him as a temporary stop gap until our appt next week. I'm really hoping the Propranolol works for him with few side effects. I will keep you updated!

Bless your heart!! I hope he feels better soon. Wish there was something more we could do for you. Once he's weaned off those steroids, he'll do much better.

Missy
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Old 06-26-2010, 08:09 PM
Laurenbetcher Laurenbetcher is offline
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Jacobs mom- I've been in your shoes with my second daughter. She had a hemangioma on her forehead and suffered from roid rage for 9 months. Her personality has since mellowed out but it took her getting all of the way off of her 7mls/day of steroids. We are all here for you. Let me know how I can help; even if it is only a phone call.

Lauren
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Old 06-28-2010, 06:12 PM
jacobs_mom jacobs_mom is offline
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Missy-- Thanks for the well wishes!

Lauren-- Wow, 9 months of roid rage! How did you do it???

We're going in today to hopefully start Propranolol and if all goes as planned, we will be in the hospital for 2 days so Jacob can be monitored. I'll keep you all updated!
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Old 06-28-2010, 10:55 PM
missy missy is offline
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Please do update us!! Don't forget!

Missy
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