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Just looking for some advice about my 3 year old son...

daskl5
Posts: 1
Joined: Sep 2013

I'm new to this site and joined because I just wanted some advise from others and I want to say that my son is currently not diagnosed with cancer and is under a doctors care!
My son is 3 will be 4 this December and i will give a little of his history from this year. Early January he had gotten the flu 3 times and developing pneumonia 2 times with it.. He recovered from all of that and in late February he got sick again, very high fever for 9 days. Took him to the dr and was tested for strep flu pneumonia, the whole 9 yards. Negative for everything.. They did a CBC diff and his WBC was off the charts at 25.1 normal is 4.0-11.0... We went back multiple times that week to get CBC checked. It went down finally but they never knew what was wrong with him, the diagnoses was fever... So lets fast forward to may, I was cutting his hair and noticed that 2 occipital lymph nodes at the base of his skull was really swollen, took him to the dr( ours wasn't in so we seen another) he told me that was his skull growing so I dismissed it, knowing that your skull does not grow back there. He has been getting random fevers lasting anywhere from a day to 7 days with no other symptoms. Not positive for strep or anything we are told it is just viruses time after time. The fevers can be mild at 99.7- 103.8 is the highest. I took him again to the dr on August 9th for problems swallowing due to his big tonsils that he has had since he was a baby and a fever but still no answers. Shortly after he developed a swollen lymph node in his neck submandibular region. He also developed dark circles under his eyes night sweats belly pain and leg pain that he has had since the beginning of the year. I took him to the dr 9/23 about the lymph node not going down and all the other symptoms. They did a CBC WBC was a little high lymphocyte absolute was borderline high and he referred us to an ENT to see about a tonsillectomy. We went 9/25 and he literally spent 2 minutes with him. Looked at his neck and said yep its swollen then looked at his tonsils and said they needed to come out. He scheduled surgery for Oct 10th. I tried to tell him about what has been going on but he blew me off and wouldn't let me talk... I called his dr and demanded a 2nd opinion and I wanted to take him to an ENT at Arkansas children's hospital. They acted like they didn't want to do it. I called children's and told them his symptoms and they told us to be there at 8:30 am this morning 9/26. This ent took his time with us and decided to do a sleep study to see if his tonsils are causing problems at night to see if that would explain the fatigue and dark shiners under his eyes. We do that 10/28/13. No surgery yet until we find an answer! He wants to watch his lymph nodes. And also confirmed the occipital bump on the base of the skull was indeed swollen lymph nodes. We got home and I looked him over really well and noticed that his right underarm looks like a lymph node is trying to swell up and I also felt a small bee bee size lump in his groin area. I know they weren't there before Wednesday because I checked before the first ent appt  oh and I forgot to mention his lymph nodes are not sore or touch they feel like a rubber ball under the skin and not hot to touch. Today 9/28 his lymph node on his neck has almost doubled in length but is not coming out any further.

I think the reason I'm so paranoid about this is because I had a cousin that had lymphoma when she was 6 and the same things were happening to her. They thought she had mono and it took 6 months for them to figure out she had cancer!! She fought and won her battle!!! I know it's rare in small kids but it happens and I don't know if I should push for a biopsy or some kind of scan?! I am keeping a close eye on his under arm and groin area and will take him the dr if it gets bigger. Here is his CBC dating back to 9/28/11

 

cbc

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I am so sorry to hear about your little boy's health problems. As a Mother, I can't imagine how frightened and worried you must be. Unfortunately I don't have any advice for you, but I'll think about it some more. I really don't understand nonchalant doctors but I know they are out there. I've seen a couple of them myself.

I don't know if you are close to a teaching hospital? Perhaps you could seek out an appoointment there.

I will pray that you find answers soon,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1021
Joined: May 2012

daskI5,

Childrens' cancers tend to be a whole different animal from those in adults, so it is questionable how relevant adult experiences would be in this case.   The practice I received care in, for instance, had about 30 oncologists, but would not treat anyone under 18 years of age.  The Childrens' Hospital is undoubtedly the right place for you to be seeking care at the moment, even if they demonstrate no obvious urgency.   While they are concerned about his sleep, I would ask "What about the nodes popping up all over, some of which are increasing in size ? What about that, doc ?"  There is a "Childrens Cancers" section here at CSN, if you have not looked there yet.  I, like you, would also ask questions here. I am only saying that site might have more focused and timely information for you.

The independent ENT whom you saw earlier has probably never seen lymphoma in a three year old in his life, and therefore does not think in that sort of mental universe.  I took my daughter to a doc two years ago for swollen nodes in her neck, and it was later confirmed as mono, but the doctor was immediately ready to be concerned about lymphoma, especially given my own medical history.  It was somewhat analogous to what you are experiencing, although she was much older (18) at the time, and her symptoms were quite rapidly diagnosed as non-cancerous. I realize your concern is many, many times more bothersome at the moment.  I guess I am just trying to say that I have dealt with something remotely similiar, but differing in scale.

You are obviously very well-informed and your aggressive involvment is most likely the best blessing your son has going for him at the moment.

I hope you will relate what the Childrens' Hospital determines. And I hope it is good news,

max

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