Ok, so here is a long background. My daughter was born prematurely at 27wks. She left the NICU in only 3 weeks. She has always been sickly. She has constant URI and takes breathing treatments twice a day. I first noticed pea sized nodules on the back of her neck and behind her ears when she was 1. Until recently, they remained unchanged. About a month ago, we noticed the nodules had become larger and there were more. I took her to the Dr. 2 wks ago. They did a CBC, CMP, and EBV titter. All labs came back normal, with the exception of Blood Glucose level being 116. She has had no recent infections, no antibiotics were given. I am a nurse, and upon reviewing all of her symptoms( enlarged tonsils and adnoids since 2yo, low grade fever usually 99-100 at all times, night sweats, low body weight she weighs only 39 pounds, and she sleeps 14 hours a day) I demand her ped Dr. take a second look. When we got there she said the lymph nodes were bigger and more in quantity, she has swollen lymphnodes in her groin and underarms as well. She had a temp of 100.1, and looked very peaked. She had lost 2 pounds since the visit 2 wks before. Her spleen also felt enlarged. The Dr. refered us to the children's hospital general surgery for a biopsy, to ENT for tonsil and adnoid removal, and to infectious disease. She did not order a ct or x-ray. i called today to demand one or the other to hopefully speed the process along. I am looking for similar stories.....do you have a child who was diagnosed with NHL? Her ped tried to act calm but I could tell there was something worrying her. I have been telling them four 4 years now that there is something wrong with my daughter. Finally they are listening. No child should sleep 14 hours a day, she starts K this august and I really just need some input. I am scared to death, in my heart I know she has NHL. Any advice, words of encouragement, or stories are welcome.
I would like to add she was negative for strep, mono, and flu. Her lymphnodes are hard, not tender, and not mobile. They range in size, the biggest are under her chin, just estimating, i would say it is the size of a soda pop lid.
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