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  #1  
Old 06-10-2005, 02:09 PM
Robin12265
 
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Default H or VM? - picture included

OK - I'm confused.* Since I found this board, I've been doing more reading/research.* I don't know if my son has a H or VM.

(I'm cross-posting this with H Help)*

Here are the facts:

Flat red spot present at birth. (less than 1cm)
At 2 1/2 months old slight swelling under spot noticed.* (Looked like a mosquito bite)
At 3 months it started to really swell.
At 8 months the bump is about 2cm high and about 5 cm long x 3 cm wide and the red spot is about 2.5cm x 1.5cm.

The bump is (and always has been) soft.

It seems to get larger when he is crying hard.

Here is the same picture slideshow (3 pictures) that I posted with my ? the other day:



Thank you for any thoughts/info you can provide.

I am very worried about $'s!* We have Kaiser insurance and they don't want to treat this - the pediatrition won't refer etc and when I spoke with someone from Dr Yagers office (I'm in Denver) he said it runs about $30K per treatment!* I'm so scared that this is a VM and that it won't ever go away on its own.* I'd thought if it was a H we could manage to get the money for the steriod treatment, but there's no way we can every afford $30K if it's a VM.* I don't want my beautiful boy to have this lump on his head his whole life!* And knowing it will continue to grow....*

Sorry for the rambling, I'm just so sad right now to think that Ethan may have to have this bump forever.
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  #2  
Old 06-10-2005, 04:29 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Location: St Marys GA
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Default Re: H or VM? - picture included

Robin,

Hi, first off what a cutie! My name is Kristie I am 26 a patient of Dr.Yakes and have a VM in my left elbow. Yes, the procedure does cost about 30k, I just had one the end of May and it 26k, I have no insurance so I can sympathize with being afraid of the cost even with insurance.
Okay on to your question, from what you have said I personally think it's a hemangioma, only because with my VM there is a mass but not no visible color, and from what I have heard most VM's that due show color it's usually bluish and at the darkest a purple.
Also based on the way you noticed it from birth and how it progressed it sounds like a hemangioma.
With my VM even though it had been present at birth I was unaware of it until I was about 15 we didn't know it was a VM until last Jan. mine is just a mass on the elbow.
Has it been dx as a hemangioma? Have you had any tests to find out if it's a hemangioma, have they done an mri on him?
Feel free to e-mail and ask any ???'s you might have...my e-mail is isleskristie @ tds.net (no spaces)

Hope that helps

Kristie
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  #3  
Old 06-10-2005, 04:42 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: H or VM? - picture included

Also, I wanted to add...that you will get the right care for your son, even though the price sounds outrageous, there are ways to get it taken care of.
I know there are alot of different programs to help finacially and things like that.

Believe me I know how frustrating it is, I was so happy when Dr.Yakes' office called to say that he could treat it and to call and set up an appt. I was thrilled I called and they asked my insurance info, I told them I had none, then when she said 30k, my jaw dropped....But luckily I have great parents and they have helped me and we got it done...

Again, feel free to e-mail me if you have any questions...also check out the MSN support group... www.groups.msn.com/vascularbirthmarksupport

You will find great help

Kristie
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  #4  
Old 06-10-2005, 04:51 PM
Robin12265
 
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Default Re: H or VM? - picture included

The pediatrition said it's a h. *But it sounds like they can/and are frequently misdiagnosed.

We have not had any tests done yet.

I sent the picture to Dave @ Dr Yager's office and he said both he and the doctor couldn't tell from the photo, so the red spot must be normal for both h and vm.
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  #5  
Old 06-10-2005, 04:54 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: H or VM? - picture included

Yes, they are often misdiagnosed, now are you using Dr.Yakes or is Dr.Yager a different doc??? If it's Yakes, Dave is awesome, he is the PA and very good..he was the one I dealt with more so then Yakes...

You shoule feel very confident with them, and you will get answers!


Kristie
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  #6  
Old 06-10-2005, 07:05 PM
Robin12265
 
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Default Re: H or VM? - picture included

Duh....Yes, Dr Yakes. Don't know why or where I got Yager..... :

Unfortunately, right now, we don't have even the $500 for the consultation.

I've heard steroids can help both (h more than vm though). I guess I'll start there and try to push my Kaiser doctor to try that.

I noticed a bright red spot on the fold of his leg near his scrotum a little larger than the period at the end of this sentence. I hope that's not another one starting. :'(
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  #7  
Old 06-11-2005, 01:26 AM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: H or VM? - picture included

I figured you meant Dr.Yakes..lol I recommend sending Ethan's picture to Dr.Waner, he is world famous for his work when it comes to hemangioma's.
My parents took a mortgage out on their house so I could get treatment b/c my employer wouldn't carry over my benefits since I couldn't work.
I hope everything works out for you, I know how frustrating this can be...

Kristie
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  #8  
Old 06-11-2005, 04:39 PM
Tamara Dawn
 
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Default Re: H or VM? - picture included

hi my name is tamara and i am going through a similar thing my daughter's whole ear and the back of her neck since your baby is 8 months old you should have no problem getting a mri/mra with CONTRAST done to see what it is for sure they dont like to do them till they are 6 months old due to the fact they have to be sedated i pushed and pushed for an mri/mra with contrast for my baby she is 3 months old finally i got it anyway just be persistent and push it make your pediatrician do an mri its your baby not his and if he doesnt then you might want to try getting a new pediatrician and then once you know what it is you can go see someone there is a doctor in arkansas Dr. Lisa Buckmiller(little rock arkansas)and she told me that she would accept kansas medicare/medicad so try to get a goverment card and then see someone i would think about her because I think she might help I have her email address if you would like to see about contacting her( I think its even on this site under physicians) just know hes your baby and you know what is best for him I am freaked to because hers is her whole ear and they think its a vm so she will have it her whole life and its sad because being her mom i want the best for her and kids can be cruel but shes beautiful and atleast its just her ear and not on her face you know anway sorry for rambling on and on also i read on alot of sites (since i found out i have been searching sites like crazy her ear was like this at birth) and with hemangiomas they can be more than one place pn the body and since you said theres another one popping up its probally that.
Tamara
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  #9  
Old 06-12-2005, 06:59 PM
Robin12265
 
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Default Re: H or VM? - picture included

I used the "Ask the Surgeon" feature on the main page and Dr Levitin has already responded! What a wonderful response time!

This was his reply:

Quote:
Robin,

Thanks for writing and especially for including the photos in your email.

I would agree that this represents a compound hemangioma. At 8 mos of age, the majority of the growth should be behind you but not always.
As for the future, although hemangiomas tend to involute with time, the size of your son's hemangioma and the fact that there does not appear to be hair growth within the lesion, these findings indicate to me that he will need some form of surgical therapy in the future; it is unlikely to involute completely whiteout some cosmetic defect, either a large bald spot and/or redundant skin on the scalp.

Although you asked for a confirmation of the diagnosis, I would be happy to answer any questions you have about treatment options as well.

Regards,

Dr. Levitin
I responded asking about treatment options, but that was just yesterday (Saturday) so I don't have a reply yet.

It's funny, but I wouldn't have found this board or started researching this again if it hadn't been for Baby Kristin on the Discovery Channel. TV can be a catalyst for good things too.

Thanks to everyone for their replies. It is so good to know we're not alone with this "problem".
I know we have so much to be thankful for, but it still hurts when people stare at him with such nasty looks on their faces. My thoughts and prayers go out to everyone with h, vm, or pws.
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  #10  
Old 06-12-2005, 10:24 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: H or VM? - picture included

Robin,

I am glad you got such a quick reply! I sent him an e-mail as well, as I still have alot of swelling and discomfort, and didn't want to phone Dr.Yakes yet....
How quick did he reply back to you?
Good Luck in finding the right treatment for Ethan, he looks like a wonderful boy and so cute!

Kristie
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