Lymphangiomatosis & Gorham's Disease Alliance Forum / General Discussion / Lymphangiomatosis / Help / Latest Posts

RE: Help

Tianlanchen — Fri, 15 Aug 2008 06:56:20 GMT

Dear all,We got the plan from VAC yesterday. The plan is quite simple: observation. They made this conclusion based on the fact that Shaodi is asymptom and he is stabil.God bless Shaodi!If anybody is interested in the plan, please contact me without hesitation.Best regards!Jianguo Chen

RE: Help

Jayna — Mon, 04 Aug 2008 19:31:56 GMT

Hi Jianguo,

That is fantastic news. Be well and stay in touch.

Jana

RE: Help

jdahlson — Mon, 04 Aug 2008 11:07:06 GMT

Dear Jianguo Chen,Thanks for sharing the great news that your son's case will soon be reviewed at the VAC. This forum and alliance are both so very important for keeping us informed and able to share information. Blessings to you and your family. I hope the VAC is able to offer you a good treatment plan for your son.Best,Judy Dahlson

RE: Help

Tianlanchen — Mon, 04 Aug 2008 09:06:27 GMT

Dear Jana and all of my friends,I have just made a call to VAC at Boston and had a nice talk with Kin. She informed me that my son's case will be discussed next Wednesday! Hurrah! Thank you all for help and I will tell later about the plan!Kind regards!Jianguo Chen

RE: Help

Jayna — Wed, 30 Jul 2008 07:52:09 GMT

Hello Jianguo,

I have sent you some additional information from the lgdalliance email. Please take a look and email me back to that address - info@lgdalliance.org or support@lgdalliance.org.

Sincerely,

Jana

RE: Help

Tianlanchen — Wed, 30 Jul 2008 06:52:51 GMT

Dear Jana, They did not give me any date yet. I am told that I have to wait about 2 month. I have sent my son's medical summary and MR scanning to VAC. Yes, I am deadly want my son's case to be reviewed as quickly as possible. I think it will be much easy if VAC can give a quick review. All of us know that Lymphangiomatosis is a progressive disease, it should be resonable to get it hurried up. But I do not know how.......?Kind regards!Jianguo Chen

RE: Help

Jayna — Tue, 29 Jul 2008 08:02:31 GMT

Hi Jianguo Chen,

I understand your concern and your desire to have your son's case reviewed more quickly - 2 months is a long time to wait, especially if he's having discomfort. The lead time at that VAC tends to be longer because they review so many difficult cases - vascular anomalies of all sorts. They will sometimes make exceptions and move a case through the evaluation process more quickly if it is critical and/or life threatening. Have they given you a date for your review? If you would like I can provide the contact information to the other VAC that we work closely with and you could see if they could evaluate his case more quickly. They also tend to have at least a month wait. Please email me @ support@lgdalliance.org if you would like more information.

Jana

RE: Help

Tianlanchen — Mon, 28 Jul 2008 08:29:01 GMT

Dear Cindy Wei,Thank you for your consolation. I think the information I got from you as well as the others from LGDA greatly help my family to fight against the disease. I have sent my son's medical summary to VAC. It is said that it takes 2 month to get a plan. It makes me worry about my son's situation. I hope he will be OK during this long waiting time. Yes, I am Chinese. I am sure I need more information from all kinds of resources when the plan come out from Boston's. Keep in touch. Kind regardsJianguo Chen

RE: Help

Cindy Wei — Thu, 24 Jul 2008 13:30:58 GMT

Jianguo Chen.I am sorry to hear the disease of your son. I can understand your desperation because I went through it too. My 6 years old daughter had Gorham's disease. It is the VAC at Children's Hospital at Boston that diagnosed her and provided an excellent treatment plan. My daughter looks like a normal kid now. I believe Boston will do the same thing on your son. Your name sounds like a Chinese and I am a Chinese too. If you want to know more about my daughter's case, you can call me (214)480-7121.-Cindy

RE: Help

Tianlanchen — Sat, 12 Jul 2008 07:25:38 GMT

Dear Jack Kelly,First of all, thank you for your information and in fact, I got contact from Jana Sheets and was informed to contact Mary Beth Sylvia at Boston Children's Vascular Anomalies Center. I have just send her my son's medical record, biochemical and scanning. Hope I will soon get feedback.Secondly, I like very much the way you established, which gives quick contact with all the relevant people, so that I can get very valubale information from different paths. This information help me from different aspects. That mades this website wonderful. Kind regards!Jianguo Chen

RE: Help

Jack Kelly — Fri, 11 Jul 2008 09:22:50 GMT

If I may, I just wish to explain that we (the LGD Alliance) have established a direct relationship with the team at the Vascular Anomalies Center at Boston Children's Hospital (as well as currently establishing relationships with several others). In this connection, it is recommended that patients/families contact our Director of Patient Support, Jana Sheets (jsheets@lgdalliance.org) so that she may provide guidance on the preliminary procedures that are necessary for having case review at the Vascular Anomalies Centers. This will facilitate a thorough and efficient handling of the case inquiry. Thanks for your help in considering the foregoing.

Jack Kelly, President
LGD Alliance

RE: Help

Tianlanchen — Fri, 11 Jul 2008 00:59:36 GMT

Dear Judy Dahlson,Thank you for giving us valuable suggestions. I will send the medical record and relevant documentations to Boston's.We are going to meet our local physicians today. They had a conference with surgeons yesterday. I hope they will provide a good plan for my son.I hope your daughter doing well. Does she receive interferon?Kind regards!Jianguo Chen and family

RE: Help

jdahlson — Thu, 10 Jul 2008 12:19:02 GMT

Dear Jianguo Chen and family,My heart goes out to your son and family. My daughter was recently diagnosed with Gorhams disease and lymphangiomatosis and although we are receiving excellent care from Children's Hospital in Los Angeles, they agreed we should contact Children's Hospital in Boston as they have a multidisciplinary Vascular Anomalies conference each week, and they review cases free of charge from all over the world. Their website is www.childrenshospital.org/vascularanomalies If you go down to the tab for "contact us", there is a place to click on for their International Center for those living outside the United States. We sent copies of our daughter's medical records, x-rays, MRI's etc, and they reviewed her case and reported back to us their findings and recommendations. (They did not require seeing our daughter in person, although it was an option if we had wanted to take her back there) I hope you are able to find some information, help through their website. My prayers are with you and your son.Judy Dahlson

Help

Tianlanchen — Thu, 10 Jul 2008 02:53:02 GMT

I am Jianguo Chen and father to my son who is 15 years old. This May he had had fever and diarrhea. After antibiotic treatment his fever subsided, but he still has abdominal pain. By ultrasound scanning, surprised the physicians, they found multilocular cysts in his introperitoneal, retroperitoneal and pelvic cavity. There are also cysts in his vertebral column by MR scanning. He experienced two biopsy and developed chylous ascites. Biopsy showed fibrosis and inflammation changes. Now ascites is absorbed. We are living in Denmark. The Phsicians and surgeons give diagnosis as lymphangiomatosis, but they do not know how to treat my son exactly. They plan to make operation to remove cysts first, but they are not sure about the operation itself, because it is the first time for them. This makes me extremely worry about the situation. I am deadly looking for suggestions, ideas, experience, or experts in this area who can provide the best treatment for my son. In short, all ideas are welcome. Thanks in advance. Desperate father and mother