Nasal Tip H - Treatment and outcome questions

[Jennawjxx]

Hey there,
My son is 9 weeks and has a growing H on his nasal tip. We met with a pediatric cardiologist today who recommended propranolol orally. He is recommending the following protocol be followed to administer the drug, does this sound "normal"

- admit my son for 24 hours, administer 1/2 the dose of propanolol monitor for 10 hours and then give full dose monitor for 12 hours and release.

- follow at cardiologist office 2 weeks later and once per month after that with pediatrician for dose adjustments.

- He said my son will likely be on the medication for at least 6 months.

Does this sound like normal protocol when propanolol is given?

Also, I can't get a straight answer out of any doctor, what has everyone's experience been with scarring after the H shrinks? It is so prominent now, I'm wondering if you will always be able to see it.

Any advice you can share is greatly appreciated. I went ahead and attached a picture of my son's H if that helps. Thanks! Jenna

[missy]

Hi and welcome!

That sounds like a good protocol for treatment, yes. Since it's a beta blocker, it's wise to monitor blood pressure when starting out.

Now, scarring: After the birthmark shrinks, there is usually minimal scarring. If a birthmark is surgically excised, that's where you have to worry about scarring.

I have known children who, because they were treated later in life, did have some unattractive stretched out skin left behind that had to be surgically treated. However, your son is so young, his skin has probably not lost its elasticity. I wouldn't think that scarring would be an issue for him, unless for some reason the propranolol didn't work.

The reason you can't get a straight answer out of anyone is because each birthmark is unique and reacts in its own way. In the cases that I know of, children who are treated early and proactively, like your doctor seems to be doing, don't end up with much, if any, sign that they ever had a birthmark.

My *opinion* is that you and your doctor are on the right path!

When will he go for his overnight visit?

Missy

[missy]

Also, see these, if you haven't already:

http://birthmark.org/board/showthrea...ighlight=nasal

http://birthmark.org/board/showthrea...ighlight=nasal

[Jennawjxx]

Thank you so much for your response. We started propranalol yesterday and are already seeing the H lighten. I have a question.....in the hospital when they began treatment they checked my son's glucose every few hours. They told me I don't need to do this at home, which just seems weird. What has been your experience with propranolol and glucose. Do kids usually tolerate it and not have any issues? Is there a recommended feeding schedule? My doctor recommended waking him every 4 hours to eat to stabilize glucose. I feel like i'm getting different answers from different doctors and no one really knows. It would be good to get another perspective.

Thanks!!

[nickbar]

When is your next appointment?