Discussions that mention allegra

Children's Health board

My almost 23 month old daughter has UP. Was diagnosed at about 4 months old. She was born with a tumor on the back of her calf orginally thought to be a birth mark. She was 5 weeks old when had a UTI and had to be in the hospital for 4 days. After the hospital stay she started getting more and more tumors and was finally diagnosed with UP. She has symptoms of systemic such as chronic diarrhea for months on end and massive stomach cramps! She is now on allegra, zantac, singular, and chromolyn. She has done much better since being on these meds that were recommended by Dr. Akin at the University of Michigan. He works with whatever doctor we have to help in her treatment. What a wonderful person he is! Candice gets massive flushing and her main trigger is heat. So we have to keep her as cool as possible at all times. Very difficult being in TX. We just recently had to move again because the rent house we were in had black mold. Which of course is not good for anyone but especially bad for her. She was having flushing and swelling of her tumors and filling with fluid even with the meds on almost a daily basis. Since our move she has done so much better! She goes in for blood work to her dermatologist every 2 months. Her tryptase level have changed from 11 to 18. Never the same. They also do tests for liver, pancreas, etc. So far they have always come out with good results! She was referred to the NIH but when her tryptase was 18 and they said that she would have to be at least 20 to be considered systemic (which I am thankful that she is not) and in order to be put into their program there. She has many large tumors (no spots but tumors) and many mastocytomas (large tumors that are always big and hard). She has had a difficult time in such a young one but you would never know when she is not having a masto reaction that she has anything wrong other than the tumors. She is a wonderful little girl and we cherish every moment with her. She is my 5th child and my last. Hubby and I have a total of 6 kids. She is the only one with masto. I have met many people with masto or that have children with masto and am always thankful for the advise and information passed along. Candice also has an epi pen jr. and atarax for emergency use (for a masto reaction). She did see an allergist/immunologist when living in East TX but now that we are in SE TX she is only seeing a dermatologist. Fortunately they have other pedi masto patients so it makes me feel better to know that. Still I worry about her and constantly keep an eye on her. It's a scary and ever changing disease!