New Here


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03-27-09 01:48 PM
New Here

I have a few questions that I am hoping some experienced parents can help me with. My daughter is three and was very sick for about three months from Nov-Feb. She was in the hospital almost the enitre time. She was having fevers and high blood pressure episodes. They thought they were UTI's and treated her with Iv antibiotics. All of her cultures for an UTI came back negative. She has been pretty good since mid January.

Here is what is concerning to me. One of the urine tests came back the she has high levels of of catecholiamine and dopamine in her urine.  On the lab results it stated that this would indicate neuroblastoma.Our pedi is very concerned and sent us to a nemphrologist because they are the ones that ordered the test.  The nemphrologist was not concerned because he said they had to be even higher for it to be neuroblastoma. The pedi is still concerned and is ordering a CT scan.

My daughter is not typical. She has a feeding issue the requires a feeding tube. Her bowel do not work so she has to use a cecostomy tube. Her bladder does not empty so she must be cathed 4 times a day. She also has Spina Bifida but is able to walk. She is as cute as can be and the love of my life.

 I am concerned that she might have neuroblastoma and it is going to be missed before it is too late. From everything I have read  neuroblastoma is very serious cancer.I would not have worried about it one bit if the labs results did not state it clearly on the results. I thnik all parents worry about their children being sick but this has taken worry to a new level for me. I feel for eveyone of you whose children have this disease. Just the possiblity of my daughter having it is eating me up with worry.

Does anyone have any advice for me? This is a new world for me that I know little about.

Thanks in advance.

03-27-09 08:42 PM
Re: New Here

Dear FL Mom-

As the mom of a NB kid, I can tell you that no kid presents with what are clearly listed as NB symptoms.  A lot of what you talk about are symptoms that could be related, but I would say without a CT don't assume the worst.  But all that being said, NB is a disease that has a survival rate, so it does not automatically mean that if your child had it that there wouldn't be treatments available.  But I would say if you're worried and the pediatrics doctor is worried, get more tests.  I don't know what the catecholamine numbers were, but if your gut tells you something more is going on, figure out what it is right away.