Desperate mother please help

karis51 · #1 04-21-2008, 11:33 AM

Hi just wondered if anyone can give me and help or advice.
my daughter is 12 weeks old and has a large caverous hemangioma on the right side of her face. Its probabley about the size of an apple and also has smaller surface ones behind her ear and on her cheek. This appeared as a small lump at approx 4weeks old but has since grew and grew. I took Mia to the hospital as soon as it came up and they kept her in over night then discharged us and said that they would send an appt through for an ultra sound scan in approx 6 weeks, in the mean time the H grew into her ear and started to squash it in. i took her back and was told that there was no follow up being done from the first appt.!!!!!!! i was then sent an appt for the Dermatologist who did not know what to do and sent her to see the Ped Dermatologist (Dr perkins). He confirmed the H and said that she would be monitored every 4 weeks to see what was happening. In the mean time (today) i went for the appt for the scan and suprise surprise the hospital had cancelled it as they felt it was not not needed but no one bothered to tell us!!! so i saw another DR who said that she would see mia again in 3 mths and we would need to see Dr Perkinks in 2 weeks, they asked me to confirm the appt at reception. Reception sent me to Dermatology who have no record of any other appts booked with Dr perkins and have a waiting list to see him of 3 mths. As you can imagine i am now going out of my mind and dont want mia to be forgotten,no one has even looked at her properly!!!. does anyone know how expensive it is to go private and if its worth it?????????
any advice welcomed as i have never come accross this. Mia is my first baby and i only want to help her but am finding out that no one really cares. i am also concerned about the growth of it.

kind regards

karis and Mia

jgoodman0814 · #2 04-21-2008, 02:42 PM

Try Looking For A Local Pediatric Hemotologist! That Was The Best Thing We Have Ever Done For Our Daughter. They Seemed Very Concerned With The Growth And Moniter It Every 4 Weeks.

mmarrari · #3 04-21-2008, 08:07 PM

I would suggest you get an appointment with a Vascular Anomalies specialist who can monitor the hemangioma and decide whether any kind of treatment is necessary. 3 months seems like way too long to wait if it is growing that fast and affecting now her ear.... I would really push for an appointment asap. Maybe Corinne can give you some suggestions of specialists in your area... Where are you?
Regarding going private, we are in Tampa Bay FL but travelled to Miami every month for our dermatology appointment then Boston and New York for surgeries. I know I wanted someone with a lot of experience so to us it was definitely worth it... Good luck!!
Marina

I also meant to add that in the meentime you can use the "Ask the Expert" section on this website to email pictures to a specialist (Dr. Levitin) for his opinion. He is great about getting back to people and VERY experienced.

nickbar · #4 04-22-2008, 08:17 PM

Hello,

I just happen to be in Washington State and my position with VBF is to help families find treatment. My son was treated at Seattle Children's Hospital as well. I am sorry to hear you have struggled with getting the appropriate care.

Are you able to post a picture of her hemangioma? If you'd prefer, you can email me directly.

Dr. Perkins is very experienced and knowledgeable in treating Hemangiomas, but we might have to seek other opinions for you as well. Dr. Levitin is a wonderful resource and I would be happy to forward any information.

Email me and we can go from there getting help and advice for your baby.

Corinne

Rachel06 · #5 04-24-2008, 11:41 PM

Karis - I am so sorry you are struggling. I am offering up support to you. If you want, I am also happy to help you in any way I can to get treatment for your daughter. This is a very scary time. You will find much support here and the parents are very experienced. My daughter, Rachel, had pretty severs segmental hemangiomas - some compound - some superficial. We went through extensive treatment and she truly does look amazing now. I am more than happy to share my experiences with you. You can e-mail me privately at sherrirfoster@sbcglobal.net if you like. I just wanted to reach out to you and offer up support. You are not alone and you will find help here.
Sherri