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  #1  
Old 03-01-2009, 03:32 PM
megs1082 megs1082 is offline
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Default Alternate day steroid therapy?

My daughter was diagnosed with a deep parotid h at 2 wks old. She is being treated by the dermatology dept at Children's Mercy Hospital in Kansas City. At the time of her first appointment, the h was measuring 3cm across. At our follow-up appointment a week later (3 wks old) it was measuring a little over 4cm and growing towards her ear canal.

The derm recommended we start oral steroids as it seems to be growing very rapidly. She is a very conservative dr. and has us administering 2.5ml every other morning (she is 8lbs). She is also on .5 ml of zantac 2xs a day. As of this morning she has had 2 doses of the prednisole (hates it). My question, (among many others as this h thing is so new) is if anyone else has had their child on the alternate day therapy and seen results? In all my researching, I haven't seen anyone else mention it until they are at the weaning stage. I appreciate only giving her a small amount and not having to give it every day, but I also want it to work!

The derm believes we'll need to continue the steroids until we reach the 7-8 month mark. That sounds like a LONG time from what I've seen others doing. Is that TOO long?

My final question (for now), would be if anyone has had any good experiences with the docs at Children's Mercy in dealing with h's?

Thank you!
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Old 03-02-2009, 02:56 PM
Sam's Mom Sam's Mom is offline
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Hi there -

Is the concentration of the medication 5 mg per 5 mL? (The bottle will show that information). From what I understand, there are different concentrations of the drug, so she might be on a stronger concentration that is stronger and therefore she needs to take less.

My son's highest dose for his deep parotid hemangioma was 2 mg per kilogram of his weight which, from what I understand, is a fairly low dose. If the Internet is correct, your daughter is about 3.5 kilos so that would equal about 7 mg daily if she was on the same dose as Sam. By that measure, your daughter's dose does seem a bit on the low side if the concentration is 5 mg/5 mL.

But Sam did have very good results with his treatment, so perhaps a lower dose would have been sufficent for him. His treatment was also only about 3 months in total - your doctor might be thinking that a lower dose over a longer period will be easier on your daughter than a higher, briefer course, especially as she is so little. The other thing is that Sam began treatment much later - at about 7 months, so he was closer to that one-year mark when growth of the hemangiomas often begins to slow down. Your doc may feel that your daughter has to be on treatment longer to address the likelihood of rebound growth.

We began to see results quite quickly - definitely by a week in. I really recommend taking photos every week so you can track how the hemangioma is responding. If you don't see some changes fairly quickly, you might consider asking about the dosage.

I hope this random collection of thoughts is helpful. We had concerns with the ear canal as well. Good luck!

Cheers,
Liz
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Old 03-02-2009, 03:11 PM
megs1082 megs1082 is offline
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Thank you for your response! It was so helpful! I took a look at the bottle and it says 15mg/5ml. I guess that explains some things!

I'm so glad you mentioned the timeframe in which to see some change - I was wondering! I think at this point it may have grown a bit since we started. She's only had two doses, so I guess it's a bit premature to judge the treatment yet? I did post another thread that you may or may not have seen. I'm questioning the fact that the h is hard to the touch. Also, I noticed this morning when I took a picture, that it has a definite, domed triangle shape to it rather that circular. What do you make of those 2 things?
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Old 03-02-2009, 07:44 PM
Sam's Mom Sam's Mom is offline
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Hi there -

Oh, good - the 15 mg thing does make it make a lot more sense!

WRT your last two questions:

I guess it depends on what you mean by 'hard' - before treatment, Sam's was about the hardness of a relaxed muscle. In other words, definitely firm but not hard like a clenched muscle. As the treatment progressed, it got "mushy" - I don't have a better word for it than that. The firmness and the temperature were two things the doc always felt for - so I began to try to guage that as well. It initially was clearly warmer than the other side of his face - this also gradually changed. I don't know if that helps.

Sam's hemangioma was rounded. It looked pretty much like someone stuck a half a small grapefruit under his skin. I can't really picture what you describe but I don't think it applies in our case.

If it helps, here's a link to a series of photos of Sam's treatment progress on our Flickr page: http://www.flickr.com/photos/liz_and...7610597896527/ I hoped it might help some other parent out sometime.

You can see that the redness is still pretty apparent (Sam will be 2 at the end of the month) but that the swelling is about 98% gone. You will also see how amazingly fat Sam's face got while on steroids. It was pretty unbelievable.
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  #5  
Old 03-13-2009, 02:47 AM
nickbar nickbar is offline
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I do believe it is a good idea to have your questions answered... best would probably be by another experienced physician in this field. I would recommned contacting one of our ask the experts on the front page.

There is an ideal term for admin. steroids... not all cases will fit into this standard, but I do agree with your questioning the length and starting off with alternating day therapy (there might be a good reason ... I just haven't heard of it in the beginning use). I would ask your doctor and seek other opinions as well. I do also believe the length of keeping her on the meds is long...and would depend on how the hemangioma responds and when the weaning process should take place.

So, I do encourage you to get these questions answered, they are very valid concerns.

Corinne
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  #6  
Old 03-13-2009, 03:49 AM
megs1082 megs1082 is offline
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Liz and Corinne,

First Liz - Thank you so much for taking the time to respond to me! It was wonderful to look at Sam's pictures! He's SO CUTE!!! His h responded beautifully to steroids and I'm happy for you that it he didn't have to be on them very long. It gives me a lot of hope to see how well it went down. Not that I think he needs it because I'd certainly be happy with that result, but are you planning on doing anything for the "red" that's left? My daughter's h is beginning to get the red veins and I'm wondering if they don't go away, is there something to do if she ever decides she'd like to?

After researching a ton, praying, and e-mailing and speaking with Dr. Waner, and also Dr. Buckmiller's nurse, I think we've reached the conclusion that we're going to try Propranolol. I started a thread regarding his opinion, but Dr. Waner recommened that we use the Propranolol or steroid injections rather than the oral steroids. He believed Evelyn would have to be on the steroids too long to be safe, and the Propranolol to be a better option than the injections. Dr. Buckmiller's nurse (Dr. Buckmiller is out of the country) said that they aren't using oral steroids anymore for Parotid H's, but would use either injections or Propranolol or both. When we first consulted with our ped derm, she was very reluctant to use the Propranolol. She is very conservative, which we like in some regards....she is very careful! However, last weekend she went to some conference and had the chance to speak with some of her collegues about it and came back much more open to the idea. She actually suggested it. That, along with the other recommendations from the "experts", confirmed our decision. So, next week we'll be meeting with the ped cardiologist to have an ecg and echo. The next week we'll start the drug as an inpatient. She'll be the first baby to use it at this hospital (for an h), which I view as a good thing in some ways. She will be monitored very closely!

The good news is the h seems to have stabilized for the time being and we are still on the every other day steroids! Hopefully the weening will be easy once we start Propranolol!

Last edited by megs1082 : 03-13-2009 at 01:56 PM.
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  #7  
Old 03-13-2009, 04:04 PM
Sam's Mom Sam's Mom is offline
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Hi there -

Thanks - we think he's cute, but we're biased! ;-)

I'm so glad you've come to a treatment decision that you're comfortable with. I remember how difficult it was to make that decision. I sort of wish that Propranolol was around a couple of years ago - but nothing to be done for that!

The redness is very very slowly fading. When we started treatment, the individual veins stood out quite clearly near his ear. Now it looks as if someone has taken an eraser to them and smudged them - still red, but not so distinct. Then there is a quite clear red patch on the cheek which is also very gradually fading.

I don't know if there's anything to be done in terms of reducing that redness. We haven't yet spoken with our doc about laser. My concern is that the redness is not very deep (thick?) and I understand that laser can actually damage normal skin in that situation. We were lucky that he never had ulcerations so there shouldn't be any scarring. At this point, I feel that we'll wait it out and, by the age of 10 or so, when whatever involution will happen has happened, we'll talk with him about it then. It feels so minor compared to the size it was!

Of course, that could change if we find that it really bothers him. This weekend, a couple of kids about 8 years old or so asked my husband about it and then I saw them pointing and snickering a bit later. Of course, Sam is totally oblivious, but it bothered me. I've had a lot of insensitive comments from adults, but this was the first time a kid had ever been nasty. (Of course, lots of kids ask about it and when we say "It's a birthmark," they generally seem to lose interest.)

The other issue is liposuction - there is still a little puffiness on that side and the doc said that often it can turn into fatty tissue which doesn't go away. So, she mentioned that when he gets older, we might consider having that removed via liposuction - safe and pretty easy, apparently. Again, we figure that's a ways off.

Sorry - a long-winded response without much of an answer! The bottom line is that we're not there yet. We're still hoping for satisfactory involution wihtout treatment and if that doesn't happen, we'll figure it out!

Please keep me updated as to Evelyn's progress - I am hoping for all the best for you!

Cheers,
Liz
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Old 03-31-2009, 11:26 PM
megs1082 megs1082 is offline
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Liz,

I wanted to update you and also have a few questions about the involution phase!

First, thank you again for your willingness to share your experiences! It is helpful to know what you've found out about the redness! I hope it just goes away for you and Sam will never really know it was there!

We did start Propranolol, last wednesday, as an inpatient at our local children's hospital. We have been having great results so far! The swelling is down considerably and the h is so much softer and doesn't have nearly as much heat in it! Her body is responding well and we really didn't see a drop in heartrate or bloodpressure since starting. I use a stethescope and check her heartrate before (2xs a day), and have instructions to hold the dose if it would happen to be below 100. We are starting to wean off the steroids. We are so pleased and hopeful that we will be able to avoid any surgeries! You're right, the decision to treat and with what, is so difficult, but I'd heard from a couple of different sources that without treatment, the parotid h's rarely involute well on there own. Had you heard this as well?

I know you can't speak for what to expect with the Propranolol treatment, but with the steroids, did you feel that once the swelling and hardness started to decrease, was it sometimes harder and more swollen than others? It seems that with the propranolol, a few hours after each dose it is SO soft (I can almost not find the edges!) and less swollen and then when it's almost time for the next dose it is a bit larger again and harder. I'm just wondering if you found this to be true as well or if maybe we're still in such a rapid growing phase that her h is going to be more stubborn.

One last question! Did you ever notice that Sam's h seemed SO much larger and more noticeable when looking at him in a mirror? Evelyn's is SO MUCH more noticeable to me in a mirror. The first time I caught her reflection, I couldn't believe it and I'm ashamed to admit that I cried! Right now, with the treatment, her h isn't all that noticeable to me in general, but when I see her reflection, it's still very obviously there. I just want it to get to the point where in the future SHE can see her reflection and feel good about herself! I know if I were her, no one would be able to convince me that it wasn't noticeable unless you are looking in a mirror!

Any insight you have will be appreciated!

Last edited by megs1082 : 03-31-2009 at 11:34 PM.
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  #9  
Old 04-01-2009, 04:08 PM
Sam's Mom Sam's Mom is offline
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I'm so glad that Propranolol is working for Evelyn! Yay!

Let's see - I didn't notice increases in the size or hardness of the hemangioma between his daily doses of steriods - it was a pretty straight decrease over that time. Since he stopped the drugs, I have noticed some small changes that still continue, but less dramatically. I notice brighter colour and more puffiness particularly when he's sick but occasionally at other times as well. Again, this was more noticable when he was younger but isn't so obvious now.

It is SO interesting that you mention the mirror thing because I have absolutely noticed the same thing - and also been upset by it. Again - I don't think it's as dramatic as it was a year or so ago but it still does look bigger in a mirror.

It's funny - it never occured to me that this could warp his own perception of how he looks to other people but of course it could. Argh! Well, I find that it looks even smaller in photos than it does in real life, so hopefully we can convince him by having him look at photos of himself when he's old enough to care.

Keep the updates coming - I am SO glad this treatment is working out for you!
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  #10  
Old 04-10-2009, 12:55 AM
megs1082 megs1082 is offline
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Liz - Thanks for your reply! I'm glad to know it isn't just me that sees a difference in a mirror! I was starting to think I was going crazy!

You may not have thought about what Sam might think about how he looks, but I didn't consider that we could just show Evelyn pictures! I did an expiriment and you can take a picture of the reflection in the mirror and it shows up - so weird! So that will be even further proof to our little ones! Of course, I'm just going to keep praying that both Sam and Evelyn won't have to be convinced and their H's will involute fully!

I saw something in that Corrine wrote in another thread and thought it might be of interest to you at some point in the future - you may have seen it already, but I'll point it out anyway.

"My son Nicholas' h. looked very similar, but grew rapidly at 2-6 weeks... he was put on oral steroids and we then started laser at about 4.5 months old."

"If you would like to see pictures of my son, go to www.multiply.com (you probably have to register to see pictures, but I will approve you)... he is on the last album, under Nicholas' segmental h. Our first priority was his eye as the h. was in is upper inner eye lid and it was causing drooping. Our second concern was the damage the h. was doing to the skin, and skull as it the h. became very thick. Laser in my opinion kept his skin firm and reduced the red. Another issue was the telangiectasia vessels (your daughter appears to have this as well) were quite thick and there were a lot of them. His doctor actually traced each vessel with a diode laser to destroy them. We could not be happier with the results. If you would like to know more, feel free to email me"


This was taken from the thread "sudden rapid growth of h". I thought maybe the diode laser could be an option for Sam some day if the red veins don't fade completely. Evelyn's are almost gone with the Propranolol, but I don't know if they may come back once with get to the point of discontinuing the drug. Her H is still doing well, but no real changes recently. It's still better sometimes than others (better particularly on the days she she is on steroids as I guess she is getting double the H killing power on those days!). I did speak to another mom who's child is on Propranolol and has an H with a deep
component, and her H does get more swollen and hard at times too. So, it seems it might either be normal for treatment with Propranolol, or maybe for treatment during the rapid growth phase. Prehaps Sam's progress was more steady because it was almost done growing? Who knows

I'll update more as we progress with the treatment!! Thanks for sharing my excitement
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