From: Donnae@fairbankscapital.com
Date: 22 Oct 2002
Time: 19:37:50
Remote Name: 10.10.17.180
My son, Cameron was born 09/04/02 when he was having a hard time getting enough oxygen, also had a very large tongue. After several tests on his lungs and every other organ in his body, the doctors decided to do an ultrasound and found cystic hygromas throughout his cheeks and his throat, some compressing on his airway and making his tongue enlarged. After a 2 week stay at the Primary Children's Hospital here in Salt Lake City, UT., his blood oxygen level was finally normal and we were able to bring him home. The doctor's said this kind of cystic hygromas is very rare due to the location of the masses, the small size of them, the fact there are so many, and just looking at Cameron you would never know he has these masses. They have only seen 3 cases of cystic hygromas at this hospital and in those cases the masses were much bigger and they were able to remove/shrink down with surgery. They sent Cameron home with a feeding tube going from his nose down into his stomach since it is very difficult for him swallow because of his tongue size. We are dealing with that, but he is now 6 wks. old and still no definate answers what they are going to do to solve the problem. They say that since there are so many masses they can't just go in and do surgery, plus they are saying Cameron is too young to do anything and we will have to wait until he is 6 months old. What if the masses around his airway decide to expand and it completely blocks the airway? It scares me to death. He breathes very loudly, like he is struggling, but his blood oxygen level is still normal, dr.'s say he is just a noisy breather. He snores loudly and has slight sleep apnea. I found a Dr. Mulliken at the Boston Children's Medical Center that deals with children with cystic hygromas on a daily basis and has seen it all. I have contacted his nurse and I am trying to get some information and pictures of Cameron's MRI and other scans from the hospital out here to him so he can look at them and see if he can determine the best route to go for Cameron's case BEFORE he is 6 months old. I can't go that long, I am sure Cameron is struggling and I am so nervous the masses will grow or erupt. Does anyone have a child with a similar case of CH where they are small, unnoticeable by the naked eye, yet alot of them? If so, has your child undergone any treatment? What kind of treatment did they do? Please help as I am losing my mind. I need some answers. May God bless you all...