Practical tips in monitoring Propranolol? - Nervous mom here. - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-23-2010, 11:15 PM
jennacl jennacl is offline
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Default Practical tips in monitoring Propranolol? - Nervous mom here.

Hi Message Board,

I am about to administer propranolol for my daughter starting next week and would like to know any practical tips you had in how to monitor vitals/side effects. I have been told to make sure she feeds well and to give her the drug after each feeding to prevent low blood glucose and to go to my pediatrician if I'm concerned. However, being her primary caretaker, I'm a bit nervous in what to look out for and do not want to call 911 for every little thing. Is there any other tips or side effects that you experienced with the drug? Any helpful tips or your experiences with it, would be greatly appreciated.

Thanks!
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  #2  
Old 11-24-2010, 12:02 AM
missy missy is offline
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Hi and welcome!

Other parents who have experience with this will come and post soon. Hang in there!

Missy
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  #3  
Old 11-24-2010, 02:35 AM
siobhan siobhan is offline
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Hi,

My 3 month old daughter has been on propranolol for almost three weeks. So far I have not seen any side effects. My sister is a nurse and said to call our doctor if she is lethargic or unresponsive. My dr said not to give her the meds if she is not feeding well for any reason or if she is wheezing. Best of luck to you and feel free to email: siobhanfahy@mac.com
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Old 11-24-2010, 05:46 AM
RsMom RsMom is offline
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My daughter has been on propranolol for about 4 months. I was very nervous and felt the same way when I started. I have just been very diligent with following what the doctors told us and making sure she is fed well and often. I also had her blood pressure checked very often (not so much anymore - they had me take her in several times a week at first, then tapered off). I feed her well about an hour after every dose. I also make sure to feed her at least every 3-4 hours. Luckily, since she has done so well with the meds, our doctor has given us the OK to let her sleep through the night as long as she has at least 2 good meals before going to sleep. Thankfully, there have not seen any side effects and her hemangioma is hardly noticable anymore. It is a bit difficult to work around the medication, especially when you are out and about but it is worth it. I cannot wait to be finished with the meds for this reason but am so happy we made the decision to put my daughter on propranolol. I hope you have wonderful results for your daughter as well! Best of luck!
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Old 12-03-2010, 08:54 PM
mperron mperron is offline
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I understand your anxiety Jennacl. My son's doctor (dr. Waner) said the drug is very well tolerated. My son has been on the drug for slightly less than a year and has had no side effects fortunately. My suggestion would be just to ensure your baby is getting regular feedings.
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Old 12-09-2010, 08:57 PM
vmarie40 vmarie40 is offline
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My daughter has been on propanalol for 6 months and has had no side effects. And the results have been remarkable for us. She has a nasal tip deep hemangioma and you can barely see it, just a little blue at times. She is on a 5 feedings a day schedule - usually eats every three-four hours when she is awake and sleeps 10-11 hrs at night with no problems.
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Old 12-11-2010, 01:44 PM
momof3inpa2009 momof3inpa2009 is offline
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I could not agree more about the comment that it is hard when you are out and about -about giving the medication. We put our bottle of propanolol in a container with a lid and we have the syringe in there too. I have 3 alarms set on my cell phone to remind me when to give her the med. But yes it is worth it. I honestly have seen no side effects other than crankiness. Seriously. One other one I have noticed since she is now walking is: Dizziness which is common. When she was a baby and was doing bottles I would try to give her a bottle after her med. But now that she is off bottles, etc. she really doesn't eat much after the med. She has had absolutely no side effects other than the two I've listed. good luck!!!!

Ps: I have now mastered giving it to her at 11 at night without her waking up. lol! I used to just leave her beside me in bed until 11-give her the med. and I would leave her with me until she would go back to sleep BUT half the time she wouldn't go into her crib so I'd leave her beside me. It was a rough night's sleep for both of us. Now that she is older, she goes to bed between 8 and 9 and at 11 I sneak into her room and give her the med. while she is sleeping. Also I don't know how many other propanolol users out there get theirs' flavored but it's a huge PLUS!!!! We pay $3 to get it flavored. (insurance co won't pay for flavoring which is so dumb!) I've noticed prop. is so sticky too...it leaves messes!!! lol!
__________________
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html

Last edited by momof3inpa2009 : 12-11-2010 at 01:48 PM.
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  #8  
Old 12-14-2010, 01:44 PM
jennacl jennacl is offline
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Thank you so much everyone for your advice and helpful tips. I'm definitely comforted knowing there are so many others going through the same thing. My daughter has been on propranolol for the past 3 weeks and has not had any side effects. Also we've noticed a HUGE difference in the first few days and now it's been a slow gradual change (atleast that's what others say--it's hard to tell since I see her everyday).

However, keeping a schedule of her meds/feedings have been tough. I feed her ever 3-4hours and give her the propranolol every 8 hours. So I manage to give her propranolol twice a day, instead three as prescribed (which drives me bonkers since I have been trying to get us on a good schedule!).

A big issue is her sleep since before we started propranolol, she was sleeping through the night and then I had to wake her up every 3-4 hours to feed, so I know she's tired. Given that I have been letting her sleep through the night, making sure she has good feedings before she sleeps, so her blood sugar is ok. However, when she wakes up, i'm reluctant to give her the propranolol immediately since she's only had 1 bottle after a 6-7 hour stretch of no food. Which explains our vicious cycle of scheduling issues.

Any thoughts on this? Do you think she should be okay with her morning dose of propranolol after a long stretch without food through the night? Would love to learn any best practices you have been doing. I'm dying here with the lack of sleep but it's worth it to see the results.
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Old 12-14-2010, 02:28 PM
siobhan siobhan is offline
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My doctor did not tell me to wake my daughter through the night for feedings. She has been sleeping through the night since before we started propranolol. She will be 4 months old next week. I agree it's very hard to force a schedule.

I wake her at 7 for her meds, she gets another bottle at 11. Meds at 3, another bottle at 7 and then meds at 11. My doctor stressed that each dose of medication has to be given with a full feeding and that Emily needs to be feeding well throughout the day but those were the only specifications. She usually takes a smaller feeding in between doses of the meds, sometimes only 2 ounces but usually takes 4 ounces with her medication.

Did your doctor tell you to wake the baby at night?
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Old 12-14-2010, 02:29 PM
phoenixihc phoenixihc is offline
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Hi jennacl,

My daughter is also on propranolol and after a full nights sleep I give it to her first thing along with her breakfast. She's usually fine..although I should also mention that she is also 15 months old. If she has a lighter breakfast she sometimes will go a little lathargic about 45 mins after her dose. This lasts about 30 minutes and then she's back to herself. The doctor is aware and since all her vitals are fine during that time, has said that this is normal. Hope this helps!
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