First Name :   Darla email address :   Cookie0241@aol.com City, Country :   Fairfield, CA Message :   This is Darla, I am 20 and have IL, just letting everyone know that I have recently began a new treatment regimine for my IL. Instead of receiving IVIG through an IV or through a Broviac or Portacath, I am now receiving it subcutaneously. It is going pret More space :    First Name :   Scott email address :   kellscott@ozemail.com.au City, Country :   Perth, Australia Message :   Look to your children to see Heros. Look to the Parents to see strength. More space :    First Name :   claire & paul email address :   thebethells@ntlworld.com City, Country :   wales uk Message :   our son has recentley been in hospital again on oxygen due to his pl,he has fluid in his chest cavity again it just keeps building up, is this normal & how often does it need draining More space :   just need support & info as his breathing is getting worse First Name :   Tonya email address :   tlynndombek@yahoo.com City, Country :   Palm Bay ,Florida US Message :   I have an 11 yr old daughter who was diagnosed in 2005 with IL. I had her at Arnold Palmer hospital were they tested her. I was told that she was a rare case because normally people who have this have other issues with the liver, heart or pancreas. All sh More space :   In the last month my daughter has started throwing up , we thought maybe she had the stomach virus, but this has happened three times, and know one seems to know why. Do you have any suggestions or recomend any doctors that are reliable with there answers First Name :   Marge email address :   aylamay67@aol.com City, Country :   Bolingbrook, IL, US Message :   Been a while since I visited. Looks great on the site. I just turned 40 this month, had lymphangiectasia a long time. Would love to hear from others. More space :   Dont know anyone else round here with IL, even Dr. at Rush has only had one other case. Would love to compare notes. First Name :   jacobs Mum email address :    City, Country :   Brisbane Australia Message :   Gday Brady I just visited your page what a cutie you are;-) please Thank Mum for giving me your page address and for visiting Our Jacobs page sending you heaps of positive healing energy and prayers stay healthy little mate love Jacobs Mum www.caring More space :    First Name :   Diane Palmer email address :   wideglidecruiser@earthlink.net City, Country :    Message :   To my Dearest and Special sisterinlaw Alecia, i cannot express how much you are loved, to share to all those who are in need of this outstanding web site you had prepared. All your hard work, time and research. My brother should be so proud. More space :   You are an Angel and you are loved so very much. I am so thankful you are my sisterinlaw. Just wanted to let you know. love, diane First Name :   Darla email address :   cookie0241@aol.com City, Country :   Fairfield, CA Message :   Hi, this is Darla again. I am signing in to say hello to everyone again. I am hoping that I can help and maybe meet or talk to anyone who has IL or any parent of a child with it. I have IL and I am now 20 years old. I am pretty sick as a result of IL and More space :    First Name :   Srini email address :   sk_srini@yahoo.com City, Country :   Chennai,INDIA Message :   It feels great to see a variety of mouth watering dishes mentioned in this site, for people with fat intolerance syndrome. Recipes likes these helps me to approach food without fear. I am having IL which was diagonised when I was 17 and Iam now 30. I also More space :    First Name :   Alecia email address :   lymphhelp@Yahoo.com City, Country :   Simi Valley, CA Message :   Hi Beth, Technically, IL is a form of malabsorbtion. They just werent knowledgable enough to find th cause of the malabsorbtion. Id be happy to answer any questions you may have. Alecia www.littleleakers.com More space :    First Name :   beth email address :   jefflsbethj City, Country :   mount carmel,tn,us Message :   i have just been told that i have il,they misdianoised me for 20 yrs saying it was malabsorbtion syndrome,so im eager to learn everything i can about this disease. More space :    First Name :   Darla email address :   cookie0241@aol.com City, Country :   Fairfield, CA Message :   Hi, my name is Darla. This is my first visit to this site. It is truly incredible. I have Intestinal Lymphangiectasia. I was diagnosed at 2 and I am now 19.If anyone has any questions please feel free to e-mail me. Hope to talk to you all soon. More space :    First Name :   Tara email address :   jeffandtara@austin.rr.com City, Country :   Cedar Park TX Message :   I am a HUGE fan of this amazing website. We lost our daughter to this condition.I look forward to the forum opening up again and learning more about individuals affected by lymphangiectasia. Thank you for the support! More space :    First Name :   Sam email address :   racer521@pacbell.net City, Country :   Simi Valley Message :   The site looks fantastic! great job! I am very proud of what you have accomplished here. More space :    First Name :   Pat email address :   lymphedemapeople@aol.com City, Country :   LAwrenceville, GA USA Message :   Hey my Friends So good to see the message board back up and running!!!!!!! Best to you and much success Pat More space :    First Name :   Barbara email address :   bam@jhwassoc.com City, Country :   San Antonio, USA Message :   Hello - I am the proud and very blessed grandmother of our baby Angel Reese. She came into our world and changed our lives and will forever be with us. Thank you Little Leakers for sharing her story. Gammy B More space :    First Name :   Julie email address :   julienull@hotmail.com City, Country :   Delray Beach, USA Message :   I was very blessed to meet little Reese. She touched so many lives, especially mine. Her spirt and the spirit of her parents will be a strength for me always. More space :    First Name :   claire & paul email address :   thebethells@ntlworld.com City, Country :   south wales uk Message :   OUR SON IS NOW 11WKS OLD, BUT AT 3WKS OLD HE WAS DIAGNOSED WITH PL ATFER HAVING A LUNG BIOPSY. A WEEK LATER THEY DID AN MRI SCAN AND FOUND OUT HE HAS CYSTIC HYGROMA ALL TANGLED IN HIS NECK GOING DOWN INTO HIS LUNGS, THE FOLLOWING DAY HE HAD TO HAVE CHEST More space :   OUR DOCTORS ARE NOT SURE HOW TO PROCEED WITH HIS CASE, ANY HELP WOULD BE GOOD First Name :   HEIDI email address :   jamesnheidi@msn.com City, Country :   Round Rock, TX Message :   I am the nurse in NICU of an amazing baby with lymphangeictatia generalized. I am serching for any information to help this amazing baby and her family. More space :    First Name :   Tara email address :   jeffandtara@austin.rr.com City, Country :   Austin Texas Message :   Hi. My baby girl was born 4 months ago and has severe PL and IL. She may not ever be able to come home unless we figure out how to stop the fluid from accumulating. I have posted Reeses story on this wonderful website in hopes to get any ideas or answers. More space :    First Name :   Rebecca email address :   witchiebecky@comcast.net City, Country :   Fort Lewis, WA USA Message :    More space :    First Name :   Denise Welty email address :   DHigh85@aol City, Country :   Eugene USA Message :   Wow, what a BLESSING! I have a 15 yr old daughter with PIL. She is having chronic stomach pain with this. She will have another endoscopy next week. We/She has most certainly had bumpy road with this disease. More space :   Please email me anyone that has a child with this condition. i have never met anyone with a child with PIL. Thanks! First Name :   Sarah email address :   sjbennetts@charter.net City, Country :   Hastings, United States Message :   Thank you so much for all the information. My son was diagnosed with IL when he was 9 months old. He is three now and doing well. We monitor his diet, and the receipes on this site are amazing. It is just nice to know there are others out there going thro More space :    First Name :   Alena email address :   alena80@mail.com City, Country :   USA Message :   you have very nice guestbook and website More space :   you have very nice guestbook and website First Name :   Bad Dept email address :   yosko70@aol.com City, Country :   Spain Message :   I found your page by chance but its very interesting More space :   I found your page by chance but its very interesting First Name :   Ramona Stokes email address :   monastokes39051@yahoo.com City, Country :   Philadelphia, USA Message :   My sister, Tammy on Jan. 10th, 2006 gave birth to a girl. Before she was born they told Tammy that her baby had HYDROPS. Fluid is present in lungs and under the skin. They keep drawing the fluid off but it always comes back. Recently they told Tammy that More space :    First Name :   Raylene email address :   reedgln@aol.com City, Country :   Colton, usa Message :   My son Kolby was diagnosed with lymphangiectasia about a year ago after a nine day hospital stay. I just learned about this web site and am so glad there is a resource for parents. I feel less overwhelmed knowing that I have someplace to get recipes and i More space :    First Name :   LATOYA email address :   TOYA_WALTER@HIGHSTREAM.NET City, Country :   NORCROSS, US Message :   HI THIS IS MY FIRST TIME HERE AND I AM SOO RELIEVED TO SEE THERE ARE PEOPLE OUT THERE THAT IS CAN SHARE MY EXPERIENCES WITH. MY SON TJ WAS DIAGNOSED AT BIRTH WITH IL AND IS DOING FINE. AT BIRTH HE HAD A SWOLLEN RIGHT LEG AND FOOT. I WAS WONDERING IF ANYON More space :    First Name :   Teri email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA USA Message :   Hi Alecia, Inviting others with IL to contact us at Mikes site: http://www2.caringbridge.org/ca/ironkidmike Looking forward to hearing from others as we learn about this little known disease by sharing our stories. Best wishes, Teri Taylor More space :    First Name :   Sam email address :   sam@brownfamily.id.au City, Country :   Perth, Western Australia Message :   Wishing everyone a fantastic 2006! Conor is doing ok - 3 weekly IVIG and albumin is doing what it can for him. Now we just have to get him walking! More space :   Hes getting cheekier every day! God Bless, Love Sam, Justin, Aiden and Conor. First Name :   Lyssa email address :   lyssad City, Country :   Kearns, Ut, USA Message :   My 2 year old son was just diagnosed with Intestinal Lymphangiectasia. Thank you for being a good support to some very confused parents. More space :    First Name :   Angelica email address :   gjolley2003@comcast.net City, Country :   West Linn, OR Message :   Thank you for this website. We love the recipes. More space :    First Name :   vince email address :   aarcurio@floodcity.net City, Country :   johnstown pa Message :   Our son is 4yrs old with IL. He has been struggling recently. Just looking for some HELP! Thanks More space :    First Name :    email address :   aarcurio City, Country :    Message :    More space :    First Name :   Tina email address :   btjarussi@verizon.net City, Country :   Upland,CA Message :   What a relief to find information that doesnt require a MD to understand. Our 8 yr old daughter has celiac & now possibly this. We are waiting for stool & blood work. EGD biopsy shows extensive dilation of lymphocytes- not exact wording, but close. Im rel More space :    First Name :   JENNIFER PHELAN email address :   phelan33@hotmail.com City, Country :   LA CROSSE, USA Message :   I HAVE EPILEPSY. IM A SURVIVOR OF A RESECTED ASTROCYTOMA AT THE AGE OF 9. I AM 35 NOW. I HAD MY GALLBLADDER REMOVED A YEAR AGO AND I HAVE LOST More space :   ALMOST 100 POUNDS. I CAN NOT DIGEST SOLID FOODS EVERYTHING GOES STRAIGHT THROUGH ME. THE DOCTORS HAVE RUN ALL THE GASTROENTEROLOGY TESTS POSSIBLE. WHAT SHOULD I DO? First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA USA Message :   Hi Alecia, Great news about the LRF progress with Lymphatic research. It was wonderful to meet you in person and to get the boys together. That is the first time, in his life, that Mike has met another person with IL!! Hope that youre doing well More space :    First Name :   Vijay email address :   vijay.ambwani@upm-kymmene.com City, Country :   Miramichi, Canada Message :   I am refered to your web site by Cord (Canadian orgaziation of Rare disorder) and will expore your web site to see If I can find some leads to Pulmonary Lymphangiectasia for our daughter 4 months old More space :    First Name :   Crystal Pereira email address :   cpereira68@shaw.ca City, Country :   Edmonton,AB, Canada Message :   Great site glad I was given your URL. More space :    First Name :   Fiona email address :    City, Country :   Devon Alberta Canada Message :   Thank you from a Home Care Nurse who initially had a hard time finding any information about her client with lymphangectasia. This is a great site and I have already passed it along to another collegue with a client with the same condition. The first site More space :    First Name :   Brad email address :   Bradley1@hotmail.com.au City, Country :   Melbourne, Australia Message :   Well Done Helen and Alecia - this is a great site - keep up the good work girls More space :    First Name :   Carly email address :   carlylouiseford@hotmail.com City, Country :   Plymouth, UK Message :   Hi Alecia, we are so grateful for all the help and support you have given us.Its so nice to know we are not alone and that we are all helping one another.Thanks again x More space :    First Name :   Karen email address :   karen.ward@dadhc.nsw.gov.au City, Country :   Sydney, Australia Message :   My 6 year old son has just been diagnosed after 2 years. They thought his protein loss was due to the liver transplant he had at 18 months.It is all a bit scary at the moment but the web site has helped a lot. It makes me feel less alone. More space :    First Name :   Anna email address :   banay214@cfl.rr.com City, Country :   Rockledge, Florida, USA Message :   Alecia, Wow!! You have reached so many people and given them the information that you so desperatley sought. I am so proud of you, as I hope you are of yourself and what you have done here. Give Dylan, Amanda & Shane our love. Sam too, I guess... :0) More space :    First Name :   Jason email address :   fitfa@btinternet.com City, Country :   Yorkshire, UK Message :   We think your site is excellent, our 14 month old son has IL and we were all alone until we found little leakers, now we feel we have a great family of support. Many Thanks. Christopher also has his own website now, where you can read all about his illnes More space :    First Name :   dee email address :   cheekydee206@hotmail.com City, Country :   norwich uk Message :   thanks to every one who set up this web site I have only been diagnosed for 3 months and its took me that amount of time to find you More space :    First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA Message :   Hi Alecia, To find the web site go to: http://www.abclocal.go.com/kfsn then click on the Childrens Hospital logo and then click on more information on Mike Taylor. Hope this helps!! Best wishes, Teri and Mike Taylor More space :    First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA Message :   Hi Alecia, Mike was honored to be on the Childrens Miracle Program on ABC 30 today. They have linked the little leakers site to the ABC site. You can find us by going to: http://www.abclocal.go.com/kfsn then click on the Childrens Hospita More space :    First Name :   Nicola email address :   nicolamr@optusnet.com.au City, Country :   Melbourne, Australia Message :   My daughter Annabel was 3 when they finally diagnosed IL! She is now almost 14. I have been looking for a website for so long! I have learnt so much reading this tonight!! More space :   Noone never explained Annabels reaction to MCT oil...so we gave up on it. Now, i will try it in very small doses and see if she can get use to it. I think the medical advice out there is really lacking! Thank goodness there is a site of many hands doing t First Name :   Sam email address :   kaisersammi0@hotmail.com City, Country :   Perth, Australia Message :   Hi, Im a med student and I met my first little leaker and his mum the other day, who told me about this web site - its a fantastic resource - keep up the great work! More space :