3 month old baby girl with several hemangiomas - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-22-2011, 05:56 AM
Sparrow Sparrow is offline
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Unhappy 3 month old baby girl with several hemangiomas

Hello. I'm glad I found this site. My daughter has 3 hemangiomas - one by the corner of her eye, another on her inner thigh and a large one on her labia. The one near here eye is small, about half the size of a pea. The one on her inner thigh is flatter, dime-sized and is just becoming obvious that's it a hemangioma. The one on her labia is a different story as it's large, about the size of the entire labia. I thought it was a diaper rash at first, then her doctor thought it was a possible hematoma (back when it was still pretty flat) and wasn't concerned. It's grown quickly and now her ped wants her to see a specialist ASAP since it's at risk for ulcerating and has the potential to obstruct her vagina and her urethra. He referred me to Children's Hospital of Philadelphia since they have an Infantile Hemangioma program. He recommended that I start with dermatology.

It took me a while to get anywhere on the phone with CHOP - frustrating. I finally got through to dermatology, only to be told that I'd have to call my ped and have him send a rush referral. I did that and waited two days until CHOP called. They offered me an appointment right away. That was on the 18th and they had an appointment for the 20th. She began taking my information for registration and then we hit a snag with insurance. My daughter has Medical Assistance. Turns out that CHOP does not have a contract with my daughter's insurance plan - Coventry Cares. I'm told they can't see me because I don't have the right insurance. I asked about self-pay and she said I could do that, but it would be expensive. She said it would be $200 for the initial visit, at least, and then anything like diagnostics and laser therapy would be very expensive. I mentioned the website for CHOP mentions that they are oh-so-willing to help families in need (both my hubby and I are unemployed) and that they have a charity care program. She says, no, I have to pay up front. I took the appointment anyway and figured I would discuss it with my husband over the weekend.

Long story short, we had to cancel the appointment because we just don't have the ability to pay at the moment. I called Coventry Cares and asked for help finding a dermatologist. There are only two and they are both an hour away. I called my county assistance office to see if I could get information on my daughter's medicaid or if they could offer resources or point me in the right direction, but nadda. There is no way to speak with a human. Now, I complained about this on Facebook and it turns out that my husband's distant cousin works at the county office and she was able to get me the direct number for my caseworker. He wasn't available today, but at least I have the information. I searched online to see who else deals with hemangiomas. I know St. Christopher's hospital for children has a few plastic surgeons who deal with it, but there wasn't a lot of information to be found. CHOP refers to having a team of various different specialists. With St. Chris, I couldn't find any information on whether or not they have anyone other than plastic surgeons. I want the option to have other specialists if needed. I'm able to switch my daughter's insurance online, so I opted for Keystone Mercy, which has a contract with CHOP and St. Chris.

I'm rambling - but that's because I'm just overwhelmed. I don't know if I'm making the right choice with switching insurance providers. I need to get my daughter in ASAP because the hemangioma on her vulva has recently started changing colors and shows signs of ulcerating. On top of that, I'm worried about her having three hemangiomas. I know that kids who have more than three are more likely to have them internally. I worry about the one on her vulva ulcerating. I'm scared of the prospect of anesthesia, surgery, laser, beta blockers, etc.

If you made it this far, thank you for reading my rant. I feel so lost at the moment.
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  #2  
Old 11-22-2011, 11:44 AM
missy missy is offline
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Hi and welcome!

I'm sorry you're having such a bad time! How awful!

First, get in touch with our insurance expert, Basia Joyce, here: http://birthmark.org/experts.php We also have a wound care expert, Dr. Serena. If it does ulcerate, you'll need some solid advice from him on how to take care of it.

I don't see anything wrong with changing your insurance online if the new provider has a contract with CHOP. Could you try another rush referral from the ped?

Missy
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  #3  
Old 11-23-2011, 02:10 AM
smurph smurph is offline
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Hi there! I feel so bad! You must be so frustrated! I was also going to say to contact Basia. I bet she could help you figure out your options. I wanted to tell you that when my daughter had her treatment for her hemangioma (surgery and laser) she was on NH Healthy Kids which is medicaid. She received treatment at Children's Hospital in Boston. I'm guessing that the rules are different for every state, but everything was covered 100% because hers was on her lip and had ulcerated as a baby. I have a hard time believing that the hospital would not accept Medicaid for a hemangioma like the one your daughter has. i just wanted to say don't give up! Get as much info as you can. You may need to make a lot of calls or even write a letter or two, but I am hopeful that you will find someone who is able to help you. Maybe you could directly contact the person at the hospital in charge of helping people with financial difficulties! Good luck! Keep us posted!
Shannon
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Old 11-27-2011, 05:23 AM
Sparrow Sparrow is offline
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Thanks guys! I made A LOT of phone calls and was bounced around several departments at CHOP. I finally got through to someone in one of the financial offices. She said my daughter will absolutely be covered no matter what even though Keystone Mercy won't take effect until January 1st. The state/medicaid will cover until then. She also gave me her name and direct line in case anyone gets confused when I go in for an appointment. So, we have a new appointment scheduled for Monday. Yay!
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Old 11-27-2011, 03:32 PM
missy missy is offline
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Wonderful news!! Good for you for having it together enough to sit down and make all those calls. We'll check in on you tomorrow and see how the appointment goes!

Great job!

Missy
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  #6  
Old 11-28-2011, 02:55 AM
smurph smurph is offline
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Great! Happy for you!
shannon
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  #7  
Old 11-29-2011, 01:40 PM
spaatz1329 spaatz1329 is offline
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I hope your appointment went well! The thing about these perineal hemagiomas is that they can be more complicated than they seem from the outside. My DD has had full body MRIs and ultrasounds and a bronchoscopy to check for hemangiomas internally. Best case scenario- your little one's hammy is only on the outside. Worst case is they are found on the inside with other anatomical anomolies of the spine, kidneys, bladder etc (PELVIS or LUMBAR syndrome). I don't want to scare you! But do be prepared mentally, I wish I had been at the time!
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Jamie
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily
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  #8  
Old 11-30-2011, 06:26 PM
Sparrow Sparrow is offline
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Her appointment was 2 days ago. It went well. The doctor is very nice and took her time to explain things. The hemangioma on her vulva is ulcerated quite a bit. She wrote me a script for metronidazole gel and for lidocaine (since it hurt whenever she peed this past weekend). She believes the best option for this is propanolol, which she would like done sooner, rather than later. With CHOP, they keep them overnight for three nights when they start propanolol so they can monitor everything. She is not concerned about an internal lesions or PELVIS or LUMBAR syndrome, so she didn't order an MRI. I don't know how I feel about that, though. She said the propanolol would take care of anything she had internally, but that she didn't believe she was at risk for that anyway. I'm to use the metrogel twice a day for the ulcer and the lidocaine up to three times a day if needed for pain. They also want me to slather on gobs of diaper cream or protective ointment at each diaper change.

I got the metrogel and the lidocaine. That was a hassle and a half because of insurance issues. I applied the metrogel and lidocaine Monday night and it already looked better by the next morning and she was a different baby as far as feeling pain with each pee. I have skipped the lidocaine since then because she does not seem uncomfortable at all anymore.

The whole insurance issue is another story and I am so close to sticking my boot up someone's butt. After being told that it was fine to use the plain Medicaid card until the new insurance kicks in, the people in the dermatology office had NO CLUE what I was talking about. They made me sign a waiver saying I understand that I might get a bill. I signed it because I wanted to get my daughter seen and I plan to fight any bills. Later that day, CVS called and said they had my prescription ready and reminded me to bring any insurance information. I explained what was going on with my insurance and that I only had my medicaid access card and they said that was fine. Then I got there and they said that person must have been mistaken and that they couldn't help me. Well, I raised a serious holy hell until they gave me her medication (no charge). Not my fault that they don't know their own policy. And, today, I got a call from the dermatology nurse @ CHOP saying they can't schedule my daughter until the insurance thing is worked out. Oh.My.God. After calling several financial offices in the hospital system, I came away with nothing. I left a message for the lady who I spoke with last week who said it was fine to just use my Medicaid Access card. She hasn't gotten back to me yet. I spoke with another woman in the financial assistance office who said I definitely CAN'T use my Access card because Morgann had an official insurance and is in limbo between the cancellation of that and the beginning of the other. Oh.My.God. She said it may be possible to get out-of-network authorization before Keystone Mercy takes effect in January. She'll still be on Conventry Cares insurance until December 31, but we'd need approval and prayer to get out of network authorization with that. I also left a message with my county assistance office, but I know it can take a miracle to get them to respond. So, I'm no where. No appointment. Nothing. I'm waiting on call backs from several people. I am just severely frustrated. I will contact Basia if I don't get anywhere today or tomorrow.

I've been so focused on the hassle with this insurance crap that I haven't even had time to process the fact that I'm terrified of my daughter being on this drug and in the hospital as well as in a nightmare scenario as far as being away from home for 4 days and getting my son to school (hubby can't drive due to a damaged optic nerve). This is all so depressing.
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  #9  
Old 12-01-2011, 12:24 AM
nickbar nickbar is offline
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I am sorry for what you are going through. Please do keep checking in with us here to have that support. It is so important to have this resource to check on details to see if you are getting good care, insurance tips and just general support from families that have been through it or are going through it now.
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  #10  
Old 12-01-2011, 11:32 AM
spaatz1329 spaatz1329 is offline
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Sorry that you are going through all this! The insurance struggles on top of it just make it worse! The hospital part stinks, but don't be afraid of using the med. It sounds scary, but most of the families here haven't had any problems with it once it is started! Hang in there, once you get through all of these initial hassles you can readjust to normal life while the propranolol goes to work!
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Jamie
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily
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