I Am Concerned About My Son

My son is 10 years old and I am concerned that he might have leukemia but the Doctors disregard my concerns and act like I am over-reacting. He has bruises on his legs that started when he was around a year old. When he was 2 he had meningitis at 3 scarlet fever. Over the years he has had numerous infections, tonsilitis, strep, ear infections, etc. He has always had adult sized lymphnodes, even as a toddler. Over the last 5 years he has deveoped chronic stomach pains, rectal bleeding, bone and joint pain, frequent nose bleeds (especially when his stomach hurts), testicle problems, and more recently little blisters in the back of his mouth, he has also developed a bluing under his eyes like he has been hit. He is 1/2 hispanic. He has had scopes both through the mouth and rectally but nothing was discovered. When I take him to the DR they tell me he is probably just trying to get out of school. How do I find out if the is Leukemia or something else serious if no one will take me seriously? His grandfather (my father) lived at the Uranium mines when he was a child and used to put it in his mouth as well as my Aunt. They have all passed away, my mother was near the fall out of the testing in Nevada as well. I have thyroid disease. Don't know if that helps...

Early stages of leukemia often show no symptoms, but as the cancer progresses, symptoms become more pronounced. Symptoms vary from person to person, but some of the more common symptoms of leukemia are:

fever,
night sweats,
frequent infections,
weakness,
fatigue,
headaches,
easy bruising,
bone pain,
pain in the joints,
swelling of the abdomen,
swollen lymph nodes, especially in the neck and armpits,
weight loss.
A combination of a physical exam, blood tests and a biopsy enables the doctor to properly diagnose leukemia. Do you know if he has had blood tests like a CBC? In leukemia his PLTs, WBC and RBC should be out of whack. See if you can find that out.
Kids do get infections and bruises. Some more than others.
Let us know what you find.

He has had some blood work in the past but if the wbc or rbc have been out of whack they have said it was probably an infection and leave it at that. When I am standing clear across the room from him I can see the lymphnodes in his neck, they are about the size of round bubble gum from the .25 machines. When he was very little he ran fevers it seemed like every couple of weeks. There was a blood test they did when he was around 8 mos old that they said was the "H" part on the test???? That if he were an adult it would be cause for concern. I just don't know what all of these symptoms add up to. How can a child have bruises on his legs for nearly 10 years in the same exact spot and not have it be a problem, and all of these little bubbles in the back of his mouth? When I try to explain it to the DRs they don't pay any attention. I thought it was just the DRs in NV but it looks like so far the DRs in UT don't pay attention to my concerns either. Of course I have only taken him to one so far but was very disappointed all the way around with him. $113 for him to tell me that my son was probably faking the stomach aches to get out of school. I am so frustrated. Do I call up someone at maybe Primary Childrens and explain his symptoms and see what they say? Who would I call and what department, I just am not sure. IF it is something serious like Leukemia how can I get it diagnosed before it's too late, or rule it out so I can at least put that fear to rest??? I am so lost, thank you for writing back and listening to me.

Just reading your post,

i dont blame you for your concerns about your son, what mother wouldn't.

I think you should try and talk to his school teacher, have a chat, and find out what they have to say. Take note of the day and times when he is complaining about a sore stomach or other ailment. What foods does he eat, does he react after eating something that may upset his stomach?.

And most of all, dont give up, keep investigating what the problem is, by getting a second, third, opinion....and so on, until you are satisfied with a doctor who can give you a better picture of whats going on.

Just some ideas i thought i would give you.

Best of luck

Mel

To answer some of your questions, ideas, etc. I have tried to sit down and talk with his teacher and quite frankly they are definately not sympathetic to the situation at all. He has missed quite a lot of school lately and that it what they are concerned about. They told me that they would no longer allow him to call home when he complains of a stomach ache, they will decide if he needs to come home or stay. Their belief is if he is not throwing up or bleeding that he is fine to attend. I do agree that he needs to try and stick it out if he can but if he is in a lot of pain I need to know to document it.
I am very frustrated with doctors anymore. I have tried to explain things to them and they act like I am wasting their time or I am searching for something to be wrong. I have always been concerned about the bruises on his legs, how can they stay for nearly 10 years??? That is not normal but I think they are thinking that these bruises haven't been there that long. He had a colonscope for the rectal bleeding and since it showed nothing they didn't follow up to see what the cause would be. When I told them about the nose bleeds and the sore in his mouth, NOTHING. The sore in his mouth scares me, it looks like a blister in his soft palate in front of his tonsil, the last doctor said it could be cyst but it definately wasn't normal but he couldn't see it at that time.
I don't even know where to start again. I thought he would be a good doctor because he was just out of school and new to the area, better bedside manner, nope. I don't even know if any of this sounds like leukemia or any other cancer because no one will come out and say yes it does or no it don't. I guess I was hoping that someone would say this absolutely sounds like leukemia or quit worrying this isn't leukemia.
I am sorry to keep rambling I am just so very concerned that by the time I get to the bottom of it, it will be too late. Thank you for caring, listening and responding. I hope things are going okay for you, still no word? Frustrating isn't it?! I hope they figure things out for you, the worst part to me would be not knowing. Best wishes for you that things will be fine!!!

Hi Just read your sons history etc and I think personally, (a mum of 2 boys) follow your instint. Go for a 2nd, 3rd, 4th opinion and dont stop still your satisified. I feel for you and your family. My mum has cancer and I understand your fears. Try talking on Oncochat IRC channel. There r loads of people their like me who can talk to you online.

Thinking of you, your son, and family


mandy xxx

I just read your story and you need to follow your heart and instinct. I have an 11 yr old who was diagnosed w/ chronic myeloid leukemia in Sept of 2005. The diagnosis was not pleasant and we are still struggling through it, but it is a diagnosis. Prior to her diagnosis, we were going to other docs for 8 months and were told everything from growing pains to my daughter was making up her symptoms for attention!! Well, I refused to believe it and took her to Children's Memorial in Sept and w/in 3 hrs was told she had leukemia. Her white count was at 708,000 (average is normally 5,000-10,000)!! If you truly feel something is wrong, do what you have to do. Doctors don't know your child more than you and they can make deadly mistakes. I feel that if I didn't take my daughter to CMH, she would not be w/ us today.
Cindy

If you haven't already, please take him to a hemotoligist/oncologist. They will give you the right results. Make sure you are covered under your insurance to boot. Hope all is well. HK

Hi there. I am so sorry this sounds so familar its scary. My son is 5. Chronic ear infections. Antibiotics for a year. Then hx of hospitalizations for croup, pneumonia and rotarvirus. For the last 2 years he has been having abd. pain. We did all of the food elimination with no success. Ruled out celiac as well. He has had a colonoscopy, upper endoscopy and ct scan. He did get dx with inflammatory bowel disease (chronic but slight) he has been on several meds for this but no success. They also found a severely enlarged lymph gland within the colon. He still has abd pain every day. Sometimes he will burst in tears doubled over and sometimes he tells me that it hurts but he is ok. Pain doesn't last long. He had one enlarged lymph node on his neck for 3 years that they were "watching" . Now there is a second big one and also a smaller one. Blood work has been wacky several times. Dr. said that it showed that the bone marrow was stressed. I said to him that we know that it is not cancer and he just said actually we don't know that. Nathan has missed a ton of school (lucky just kindergarden). Teacher is very worried as she used to work with sick kids. She is now documenting all. He is very pale and has been very low on the growth charts. Went one year without gaining any weight. Finally gained a pound when added ensure to diet. He sleeps all the time will take a 2-4 hour nap on weekends. He bruises easily and has had rectal bleeding and a few bloody noses. He complains of testicular pain at times along with leg pain. He doesn't eat very much and he is pale and gaunt. Looks worse since Sept. At Halloween we found the coolest batman costume (his fav.) and he went to one house next door and then asked to go home and lay down as he was too tired. I also feel like the dx that we have isn't the end that something else is going on. Our peds said to go for a second opinion. I can pick up records from GI in two days. We are trying to get into childrens hosp. but it is a 3 mo. wait. UGGG. I don't want to be dealing with this and not knowing when he is 10. I am so sorry that you are going thru this too.

go with your gut feeling. mothers know best. even though your affraid to hear bad news. If it turns out to be lukemia, maybe you can catch it in time. my son is 15 and was diagnosed with aml leukemia back in june. He had no symptoms. I just took my three kids for routine bloodwork and it showed up. you need to find a better doctor. Your son is showing you signs use them wisley. Good luck. --Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --