InstantForum.NET v4.1.4Lymphangiomatosis & Gorham's Disease Alliance Forumhttp://www.lgdalliance.org/forums/forum@lgdalliance.orgFri, 21 Nov 2008 09:27:31 GMT20http://www.lgdalliance.org/forums/Topic157-16-1.aspxRosalyn has been diagnosed with Lymphangioma since she was 7 months old. The first mass was surgicaly removed from the axilla at 9 months old. There were alot of complications that the doctor didnt expect and Rosalyn needed 5 more surgerys in a period of a few months to tie off lymphnodes and place drain's and repair damaged tissue from infection.She was hosiptalized 4 times besides the surgerys with out of control fever's and severly dehydrated. She was outputing 115 ML of fluid a day from the drains and the area was still swelling up. Within weeks of removing the primary axilla tumor Rosalyn had a bump appear on the Back Flank area. It continued to grow and and after a quick spurt it was set to be surgicaly removed also. The surgery had to be rescheduled twice due to Respitory problems and Bronchitis.The Second Mass was removed in January of 08. Within hours of the surgery Rosalyn began to complain of Hip/Groin pain on the right side.She is now 2 1/2 btw, Two days later the Back and axilla was swollen full of fluid and they had to be drawn off. This continued for 2 weeks every other day before she finainly stopped swelling up. During the time, the doctor rigged a mini drain out of a large Iv catheter. This helped immensely.Rosalyn was reassesed by her surgeon on Tuesday and we found that their is a cluster of Hard Tumor's/Masses in the axilla once again and that the Groin Lymphnode cluster is swollen and showing signs of Tumors also. I had to badger the Doctor for 6 months before he would believe that a new Growth could be occuring there. Also Rosalyn is not walking correctly and walks on tip toes or skips. She is beign reffered to a podiatrist To have her legs measured and is set up for a mri/catscan in september to evaluate for pelvic lesions.Rosalyn's Doctor has said its possible she has Lymphangiomatosis ,he is not prepared to diagnose her yet. Looking at her past medical history and comparing it to Both Lymphngioma and Lymphangiomatosis she does not have lymphangioma. Lymphangiomas are suppsed to be one localized set of masses if they are micro cystic like hers are. So at this point Im wondering where that leaves my daughter?At 2 years old she complains daily of Hip and butt pain.She is on her third set of tumors and in less that 18 monthsShe has reactive Ashma and her treatment for both diseases are compromised because she cant have thesteriods because of all the surgery's.She has no more options on treating the axxilla tumors. There is major damage to the nerve in the shoulder that runs through the axilla along with the veins from the the first surgery. Repeating surgery would kill them completley. And since the Masses are hard with no lymph fluid in them, Sclerosing therapy is not a option. So looking at it from this side of the wall , Its either keep waiting and do nothing or go insane while waiting.I should also mention that I do my daughter's Physical Therapy at home. We do Rebounding therapy and the Doctor while sceptic at first has asked me to increase the daily therapy because its obviously work since their is not fluid in her tumors. He said suddenly stopping might cause the area to flood with fluids rapidly.He also said Rosalyn's balance would wow a Olympian and that most 6-8 years old are not as well balanced as she is. Before starting the therapy she fell on average every other minute.So any Thoughts , Advice or Question's?Kym-Berly, Rosy's momFor pictures please follow the link below. The site doesnt like my uploads for some reason. Thanks http://s283.photobucket.com/albums/kk281/kymberlybarrrera/Thu, 21 Aug 2008 06:43:30 GMTRosysMomhttp://www.lgdalliance.org/forums/Topic90-16-1.aspxAt the moment, Taylor is doing great. She attends school and honestly has minimal side affects compared to many others. # years ago she was in and out of the hospital with severe headaches and it was discovered that she had 2 bony lesions in her scull. Her case is atypical because that is the only symptom of Gorham's she has. the destruction has caused vision and hearing loss in her left side as well as facial palsy. The Doctors call it Bell's Palsy, but I no longer agree with that because she has had it for 3 years. I would love to exchange stories with anyone. Talking about it only helps in my opinion.Fri, 13 Jun 2008 08:00:05 GMTbugsmomhttp://www.lgdalliance.org/forums/Topic49-16-1.aspxMy daughter Robin was 15 years old when she was diagnosed with Lymphangiomatosis. She lost her battle 10 years later at the age of 25. When she was diagnosed, she was given 6 months to live.I am here to share, to help, and to listen. Being a mom who had a child with Lymphangiomatosis, isn't easy. My best advice is to be there for your child. The hardest thing I had to do was remember that, though I was hurting, scared, angry, etc. It was not ME who had the disease. I know how hard it is to deal with all the uncertainity. God truly blessed me the day he brought Robin into my life. He blessed her the day HE called her home.Fri, 23 May 2008 05:54:06 GMTblessedmom