Confused mom

kharris18 · #1 05-22-2008, 08:12 PM

Hi! I am new to this, my daughter Avery is 4 months old and I was just told 2 days ago that she has an H on her lip. When she was 1 month old, she was diagnosed with an H on her shoulder (its about the size of quarter) and also one of her hand (about the size of a quarter) Both of these are bright red. The one on her lip is on her upper right lip and its about the size of a pencil eraser, its not red but more of a blue color. My pediatrician acted like it was no big deal but told me to schedule an appt with a dermotologist "just in case" but she is more for the wait and see approach. Well, I am very upset and not happy with just waiting to see if it gets bigger. I am located near Philadelphia and was told by CHOP they could see me in November. I was able to get an appointment with Dr Kirshner (the p/s at CHOP) tomorrow. I also called Dr Waners office and got an appt for next Tues (I thought I would have to wait months to see Dr Waner) I am so confused, should I go to both appointments? Dr Waner is not covered by insurance I was told! Everyone is telling me (friends and family) that Im over-reacting but this is my baby and I dont want it to get bigger. She is already having problems drinking her bottle b/c the H is blocking one nostril. Im a new first time Mom and I am very confused and upset, any help or advice would be greatly appreciated!
Thanks!
Kristin

The pic is from a month ago, when we first notice the H on her lip. You can also see the one on her hand. It has gotten bigger since this pic was taken and is now blue/purple color.

lpm · #2 05-22-2008, 11:31 PM

Dermatology at CHOP is taking new patients now...they told me they weren't taking new patients (almost four years ago). When I explained the situation, they just said, "We have cases much worse than that."

We did see a young doctor in Plastics at CHOP when my youngest was 2 months old, and later saw Dr. Low. They were very pleasant, but they are VERY conservative. I would go to the appointment tomorrow, but see Dr. Waner too.

While we had oral steroids prescribed locally, we ultimately went to CA for surgery (2 surgeries) with Dr. Reinisch. Get all of the opinions you can right now, and keep your options open. Good luck.

nickbar · #3 05-23-2008, 12:58 AM

I believe you were able to get into Dr. Waner's office so quickly because of the location of the h. , if any lesion is growing and blocking part of an airway it is not acceptable to wait four months. It is helpful to have multiple opinions too. I would consider going to see Dr. Waner as he has the most experience with hemangiomas. It is common practice in many centers around the U.S. (and beyond) to "leave them alone"... but one receipt for everything hemangioma is not acceptable. Often leaving them alone is good...but you should be given the options and why the doc believes it is a good route or bad route to take.

If I can help you in anyway, please let me know.

Corinne

mhartle · #4 05-23-2008, 11:59 AM

Hi,

I don't think you are over-reacting...and I personally would not wait to see if it gets any bigger. I've had a few doctors tell me to "wait and see" if it goes away on its own. (My daughter has one between her eyes at the top of her nose) We are going July 1 to California (we live in PA) to Dr.Reinisch to have it removed. He tells me they don't go away and if they appear to go away they leave behind a fatty tissue that looks about the same anyways. He seems wonderful...
no, insurance doesn't cover it b/c they say it is "cosmetic". We are paying out of pocket (about $5000) for the procedure. It kills me that a benign tumor is cosmetic! uggg!
Your daughter is so beautiful! Very cute!

Misty

kharris18 · #5 05-23-2008, 06:47 PM

Update: I saw Dr Kirschner this morning and he said it is not very big and he does not feel treatment is needed at this time. But he did say it will keep growing, mostly at a slow pace. He said the oral steroids have alot of side effects (can stunt growth, immune system weakens, causes stomach problems, high blood pressure) and injecting the H can cause tissue loss around the H (which can never be repaired) He wants me to bring her back in 2 months. Im so conflicted. I think I am still going to take her to Dr Waner to get a 2nd opinion (I feel its 100% worth the 350 dollars) But now Im afraid of all the side effects of treatment?????

lpm · #6 05-24-2008, 01:37 AM

Go see Dr. Waner and find out what he thinks. Yes, there can be side effects to steroids, but from what I understand (from speaking with some of the top docs mentioned on this site), the effects are not permanent. My youngest took oral steroids for 3.5 months, and later had a steroid injection. Oral steroids were prescribed locally (Philadelphia area), but they would not do the injection around here - we went to CA for that.

My youngest did not have stomach problems, and was the healthiest of my three kids while on steroids (i.e. no immune problems). Her height was stunted for a very brief time, and she was labeled FTT due to lack of weight gain (though her older sisters are lightweights too). She is almost 4 years old and weighs about 27 lbs.

As for insurance, my understanding is that Dr. Waner is not in-network with any insurance companies, but that doesn't always mean that insurance won't cover it. We went to Dr. Reinisch in CA, in part because he was in-network - and insurance did cover both surgeries.

kharris18 · #7 05-27-2008, 10:30 PM

I wanted to post another update (I figure it might help someone in a similar situation to hear our story) Also, thank you to everyone for the advice so far. We went to see Dr Waner and Dr Levitin today. They told me I came in at a perfect time b/c her H has not gotten very big yet and now they can watch it closely. They told me to take pictures once a week also to track the growth. They said if it continues to grow, they would like to do a steroid injection to shrink the size and stop it from growing larger. Right now the H is too small to do the injection. I asked about oral steroids and Dr Waner said no the injection is better (alot of side effects w/ oral steroids) They are not going to do anything with the ones on her shoulder or hand. So, we have another appointment in 6 weeks for her to be checked again. When my husband & I walked in the waiting room today we saw alot of kids with MUCH worse birthmarks then our daughter. I started to question if we should be there. I said that to Dr Waner and he said to me "your daughter is just as important to me as any other patient I have" I feel so much better that we made the trip to New York to see them, it was 100% worth it.

missy · #8 05-28-2008, 11:34 AM

Dr Waner is just fantastic, is he not?

Thank you for the update! I'm glad you are so pleased and good for YOU for being so proactive!

Keep us in the loop and come back often. Please get in touch if you need anything.

Missy

nickbar · #9 05-28-2008, 08:54 PM

I would encourage you to talk to Dr. Waner directly about side effects. He will be straight with you. There are risks with treatment, but he can share with you the pros can cons to each and why/why not do tx.

Corinne

nickbar · #10 05-28-2008, 08:56 PM

Misty,

I would encourage you to fight your insurance co. and work with the doctor on billing codes. It should not be considered cosmetic. This is what the insurance co. want to label it as to avoid paying. Work with Basia the VBF Insurance expert... you can appeal and win approval. Many families have won coverage. Don't take the first (or even second) "NO".

Corinne