Hello. This is my first post. I would really appreciate any honest opinions on our situation or just some support. Thanks.
I took my son to the doctor two weeks ago because his lymph nodes were swollen and he had a fever of around 38 C. By the time we went to the doctor the fever was already gone, and the doctor said it was probably mumps, even though he's been vaccinated. After a week the swelling had neither disappeared nor gotten bigger to what you typically think of with mumps, so I took him back and they tested for mono. This was also negative.
We were referred to a bigger hospital and they tested for mono again and also did complete blood work. Mono was negative, his white blood cell count was slightly elevated (a little over 10,000, 10,500 or so? Which the doctor said could mean any one of a number of things because white blood cell count would also get higher with an infection... is that right?) I am cursing myself for not keeping the printout because I don't remember what the other number was that had him worried... there were three types of blood cells that he said would not normally be there at all. Two of them were 0 b ut one had a small number... 3 or something? Unfortunately I was not thinkign clearly, he told me that I could keep the printout but at the time the only thing that occurred to me was "And what would I do with a page full of medical mumbo-jumbo???" So... I'm sorry that I can't be more specific there. He said that this could be transient so he took more blood today to see if whatever it was had gone away. We won't know that until next week.
His lymph nodes are still a little swollen but much smaller than they were... you can tell if you touch them but they're not really visible anymore. The doctor also confirmed this. He had one more fever on Saturday night. After resting on Sunday, he's been fine since then. I thought that fit with the mono idea... except that blood work ruled that out.
He does NOT have bleeding or bruising, swelling in the abdomen or groin, night sweats or chills.
He's been kind of a picky eater lately but he DOES eat... give him a chocoalte bar and he will eat the whole thing. For a 3 year old, I'm not sure if that qualifies as loss of appetite or not. He'll eat what he likes, turns up his nose at veggies... that might be pretty normal though?
He also seems kind of in a bad mood lately but I'm not sure how much of that is feeling bad and how much is not liking being taken to so many doctors and being told he can't play with his friends AGAIN today. When he is in a good mood he plays normally, fights with his older brother, etc. The doctor even said that he thought the possibility of leukemia was low because he seemed so energetic... does that mean anything? Is it possible to have leukemia and still feel like running around with other kids?
I know that doctor's aren't supposed to get your hopes up OR depress you needlessly... so all he would say is that these are the possibilities, let's do more blood work and if whatever that unusual blood cell count was is still there, think about a bone marrow biopsy.
If he's even thinking a biopsy, does that mean he's pretty sure? Or does the fact that he didn't hospitalize my son immediately mean that there IS a decent chance it's something else? I know he's not supposed to give percentages or anything right now but does this sound like I should keep my hopes up, or prepare for the worst?
I hate to even ask this... but assuming the worst, what can we expect long term? The five-year survival rate for kids is high and that's great... but what about getting out of the hospital, growing up, going to school, joining the soccer team he wants to join so badly... even if it's not next year, sometime?
I just keep replaying every minute of his beautiful little life and tearing up... and thinking about everything he wants to do... even at 3 they have so many big dreams and anything and everything is making me cry.
I'm not asking anyone to build my hopes up falsely... I went in today thinking it would be mono, because everything seemed to FIT... I don't want to be optimistic if that's not a realistic option. Just... what does all of this sound like, REALLY?
Hello, I can see how worried you are and no one has responded to you. I also posted on the Lymphoma board out of concern for my 18 year old son who has enlarged lymph nodes in his neck and I also have not gotten any responses. So I thought I would respond to you! Have you gotten any answers yet? I don't have any solid answers for you but I have raised four boys, my youngest is 15. I can tell you that often, if the pediatrician senses that you are very worried, they sometimes are very aggresive with testing to put your mind at ease. That might be why he is doing so many tests. When you say your son has a fever, how high are you talking about? I remember that my boys temps varied quite a bit depending on the time of day and what was going on (if they were upset and crying or playing hard, for example). I remember my boys would get very enlarged lymph nodes right behind their ears for days with no other symptoms. I was and still am a very worried mommy myself, so even if I don't have any solid answers for you I just want you to know that your not alone
Hello mummies, thought I too would join in on your post as I too put post on but no replies.
I too have a 3 yr old with one enlarged node in neck, not sore and hasn't changed at all. Been there for nearly 10mths now. My gp has really made me feel silly about it and saying its fine and im over worrying but over last few mths his behaviour has changed, very emotional waking lots at night feeling clamy getting full quickly, and a few other symptoms. My gp tells me its impossible for him to have a lymphoma though my research says different. Finally he has been referred after I told the doc they were not qualified to say its impossible. So he has appt with pead in a few weeks.
Donchan5 did you ever find out if your son was ok, we are very similar with our sons also take comfort knowing its not just you going through the same worry. Really hope you and your son ok.
And bballmom im going to look at your first post
I'm sorry you're so worried. I had childhood leukemia. They usually do a biopsy or a bone marrow test to definitively rule out leukemia because the blood tests don't always reflect a problem. Its very usual that if you have leukemia you will have extreme fatigue because your body is fighting so hard against the cancer. But especially in someone so young they could be just ignoring that symptom.
I would suggest that you shouldn't worry too much. Just make sure that you are persistent with the doctors until thy find out what is wrong.