Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Can you read the symptoms below and email the mother, Kim kim.newman@... if you know anything that might help? She is unable to find out what the diagnosis is with her 2 year old with DS. We are all stumped here in Arizona. Janet Romo president of DSNetwork Kairi just turned 2 on the 14th and it was a sad birthday because she was sick and actually has been sick for 8 weeks now. Every morning she wakes up feeling pretty good and eats ok but as the day goes on she starts to get hives and the hives get worse and worse. As the hives spread she starts to get a fever and sometimes joint pain in her hips. By the end of the day she is covered with hives and has a fever ranging anywhere between 101 to 103.4 and is completely miserable. Once or twice a week she will get a runny nose but never much else. This went on for 7 weeks through many doctor appointments and tests. They admitted her last week and only kept her for 3 days because after more tests could not find anything and want us to work with the pediatrician to figure it out. While in the hospital they did so many tests including a chest x-ray, Hplyori, respiratory tests, stool cultures, rhumatology tests, CMV, Valley Fever, IGE for allergies, HIV, Kawasaki disease, Micro-plasma and many basic blood tests and all were negative. After we got home we both came down with the flu from being in the hospital so she stopped eating and drinking. She actually had stopped eating and drinking the last day we were in the hospital and they still sent her home. Yesterday the most I could get her to drink was 4 oz and some of that I actually forced her to drink through a syringe and she ate maybe 10 bites of food through the whole day. We are taking her to get an echo today to make sure there is no infection in her heart since she had the VSD repair but don't expect much. I am desperate to help her, she had completely regressed in all ways. She was so close to walking and had mastered crawling and was even starting to drink from a sippy cup and eat with a spoon and fork. Now she won't even hold her own bottle because she is so weak and won't stand and never crawls. She is only happy watching Elmo or with me holding her and reading books to her. Anyone have ANY ideas? The first three years are so important and I feel like she has struggled through the first two to get where she is and now she is falling backwards. She is now at 8 weeks of daily hives, fevers and being miserable and I am going crazy, HELP! Thanks Kim I actually have talked to Dr. Leichtman once about this and he told me to do some things that we were already doing. We have seen an Pumonologist as well as an Allergist as well as GI, Immunology, Hem/Onc, Rhumatology, and Infectious disease and still no one can help her. I am very worried about the fact that she won't crawl or even hold her own bottle any more. She has lost weight and just won't drink more than 4 oz a day and barely eats. I know she will end up back in the hospital soon and am getting sick of no one knowing what to do. I know they are all trying to help her but nothing is happening. I did have a parent from our group contact me who is a doc and he is being wonderful to help us and has given me some new ideas to try. She has had an abdominal ultrasound and chest x-ray as well as a bone scan and nothing has come up. The problem is now along with the occasional joint pain in her hips her finger joints are swelling and she seems like it hurts her to be picked up a little bit. She still is barely eating or drinking and has lost some weight. Monday we are checking labs again. I sure wish it was something like her ears so at least we knew how to fix it. It may turn out to be something like that that they just missed and we can fix, I sure hope so. Janet Romo Special Education teacher at Carl Hayden High Instructor at Ashford University President of Down Syndrome Network Think with your heart, feel with your head, and know with your whole body Our feelings provide us with valid information about ourselves Paloma, Seve, and Liliani (ds) AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
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