Phone consult with Dr. Waner! Re: Parotid H - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-06-2009, 09:59 PM
megs1082 megs1082 is offline
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Default Phone consult with Dr. Waner! Re: Parotid H

I just got off the phone with Dr. Waner. First let me say how wonderful he and his nurse, Corey, are! I e-mailed them yesterday morning and by the same afternoon he was calling me (I couldn't take the call though, so he had to call back today).

Anyway, I wanted to let you all know what his current thoughts are on treating parotid h's. My daughter (4wks old) is currently on oral steroids 2.5ml every other day. He recommended we take her off the steroid. In his opinion, the oral steroid is too dangerous given the amount of time my daughter would have to be on it because of her age. He said we could either do steroid injections (my current ped derm at Children's Mercy in KC strongly recommended against them as she said they treat children who have had them in the past and experienced BAD side effects), or Propranolol. He said he'd recommend just going with the propranolol. In his opinion it's perfectly safe. They are using it without the initial period of hospitalization that I've seen other facilities are using. He said if we treated her correctly now, it would involute nicely and we'd have no need for surgery later.

I do of course realize propranolol is just now being used for hemangioma treatment. If it were just any Dr. telling me to go ahead and use it, I'd probably think they were way over the top and couldn't be trusted. I've heard so many wonderful things about Dr. Waner though, and nothing bad. Believe me, I've looked for bad things! If anyone has had a bad experience, I would ask you to please contact me!

I almost feel like his recommendation and outlook on how things will go is too good to be true! Someone tell me if it is and sounds "fishy"? I've heard other bad outlooks for parotid h's....statistics saying that only 10-20% are able to be treated to cosmetic acceptability.

I'm interested in hearing people's thoughts as to his comfort with Propranolol.
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Old 03-07-2009, 12:15 AM
mamatomaysie mamatomaysie is offline
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We have had a good experience with propranolol. The hemangioma is involuting nicely, and no more ulceration since it's no longer growing. Maysie was a little drowsy for the first week of the medication but has had no other side effects. I'm very pleased. I think it's a much better option than steroids.

However, I highly recommend starting the medication inpatient. Even more so since your daughter is only 4 weeks old. This drug has been used on infants for years and usually has no adverse effects, but there is the potential for bradycardia, hypotension, and hypoglycemia. Your 1 month old won't be able to tell you if she's feeling dizzy or something's not right when she's starting the medication. We were only inpatient for 48 hours, just long enough for Maysie to get her first six doses. But it gave me and her doctors peace of mind to know that her vital signs were being monitored closely as we tapered her up to her full dose. Most likely everything would be fine to start the medication at home, but I wouldn't even take the chance. I'm not trying to scare you, this is just my opinion. It is a powerful drug.
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Old 03-07-2009, 01:37 AM
CarrieChris CarrieChris is offline
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I agree with the above post. I wouldn't want to be the one responsible for monitoring a newborn for complications. I always found it tough when our daughter was so small. I remember that they recommended that we take her off of steroids in a month after being on 5 mg/kg. They told us to do that but never sent any notes to the doctors that were managing the steroids and they weren't willing to be the ones to do it. It was frustrating because we were stuck in the middle. Our daughter ended up having alot of complications due to the steroids and luckily our local physician managing the steroids trusted us and usually did what we told him was recommended.

Always follow your gut instinct. I think that you will know what to do. Make sure you have someone locally to follow. You would never want to be in a pinch and not have someone around. Dr. Levitin was always there for us every single time we had a question or concern. I am sure they will be the same for you.
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Old 03-09-2009, 04:12 PM
megs1082 megs1082 is offline
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Default Thank you for your comments ladies!

You didn't scare me; not anymore than I already am anyway! I appreciate your honest input. My thoughts were to go ahead with starting as an impatient as well. We also still haven't decided to use the Propranolol or not. I've been doing a ton of research, so I think I've reached the conclusion that it's the safer option, however my husband gets to hear all the info second hand and isn't so convinced. I'll get the real scoop tomorrow, when the measure it at her derm appointment, but the h seems to have stabilized for the time being. It's hard for me to tell with certainty if it's growing or not because her cheeks are growing so rapidly with the steroids! My husband thinks maybe we should just stick with the steroids if they're keeping it from growing. It's so hard to know what to do! I've also consulted with Dr. Buckmiller's nurse (the Dr. is out of the country), and while she doesn't know which she would recommend for sure, she said Dr. Buckmiller would either treat her with steroid injections or Propranolol or both. So, it seems the "experts" are recommending Propranolol and our Dr. is recommending steroids. Our Dr. says Propranolol is too dangerous and so are the injections, the experts say steroids are too dangerous. It would seem the experts should win, but it's hard to get the other warning out of your head!

As far as being an inpatient is concerned, I have a few questions for those who have done it with the Propranolol. Our Dr. told us that if they did treat with Propranolol, their protocol didn't include a hospital stay. The Ped. Cardiologists at our Children's Hospital didn't think it was necessary. That being said, I think our Dr. would admitt her if we requested it. She didn't think our insurance would cover it though because it's "cosmetic". I'm wondering what all of you experienced as far as insurance covering the stay? In general, if your doctor admitts your child, is it covered, or are there exceptions? My insurance is United Healthcare HMO. We don't have any deductible and 100% of inpatient stays are supposed to be covered. I'm scared to just call the insurance company and ask because I don't want to put any red flags up. Any ideas or tips on how to handle this?

Also, I know this post is already long, but does anyone have any research/info they could share on Propranolol. I'm researching as much as I can, but know there has to be things I'm missing. I'm looking for any info I can find as to Propranolol use in infants - safety, side effects etc.

My direct e-mail, if it would be easier, is megs1082@hotmail.com
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Old 03-10-2009, 02:24 AM
CarrieChris CarrieChris is offline
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Default Propranolol vs steroids

I don't know much about the propranolol but I can say that our daughter was on steroids for 11 months and she developed severe hypertension requiring blood pressure medication every 6 hours, and pseudotumor cerebri. She also had very severe reflux and poor wound healing. She developed blue sclera and grew alot of hair on her body. I would say that steroids come with significant side effects too.

Carrie
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Old 03-12-2009, 01:50 PM
khubbard khubbard is offline
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I agree with Carrie regarding the side effects of steroids. I think it is highly debatable whether steroids are "safer" than propranolol. The side effects of long-term steroid use are well documented and include decreased immune funtioning, stunted growth, and gastrointestinal upset to name a few. My daughter was on them for 5 months, and she had horrible stomach pain and couldn't tolerate ANYTHING besides breastmilk. She is also still in the 10th percentile for height and weight (she's almost 8 months old). It's hard to tell whether that is a direct result of the steroids, but it is known that slowed growth can be caused by them. She has been on propranolol for a little over a month, and I can tell you for certain that I WISH we had had the option in the beginning to use this and avoid the steroids altogether. We have been very pleased with the results of the propranolol, and have seen ZERO side effects. My understanding is that propranolol is a very old drug that has been used for many years and is generally safe (both my daughter's pediatrician and specialist have said this). Generally speaking, the dosage of propranolol given to treat children with hemangiomas is much less than what would be given to a child to treat high blood pressure (what the med is designed for). I know my daughter's dermatologist consulted with a highly respected pediatric cardiologist who stated that he treats children on two and three times the dose of propranolol that my daughter is on. This is NOT to say that children do not need to be monitored closely when beginning the medicine. Obviously a child being treated with it for high BP is different that a child taking it with normal BP. My daughter had home health nursing 3 x a week for several weeks to check her BP and blood sugar in the beginning. By the way, we did propranolol at home without a hospital admission and did just fine with the support of the home health nurse. But, my daughter was 6months old, so I know that changes the circumstances a bit. You can read more about my daughter's story at http://hubbardbabynews.blogspot.com
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