Wednesday, December 16, 2015

When Our Children Are Sick

It is so tough when a child is sick. It's even harder when there aren't any answers to WHY the child is sick.

My youngest son, 16 month old, G-man, has Chronic Lymphadenopathy (swollen lymph nodes >1cm for longer than 6 weeks.*) I first noticed a small lymph node on the left side of his neck back in October while I was playing with his beautifully fluffy strawberry blonde hair.

Around this same time my other children were sick so i assumed he was getting sick as well. I didn't give it a second thought until we all came down with strep throat at the end of October. On Oct. 28th me and my two older children were diagnosed with strep throat. At the kids' doctor's appointment G-man was diagnosed with a double ear infection. I brought up his swollen lymph node to his doctor and we both agreed that it was probably related to his ear infection. We then started a 10-day course of antibiotics.

fluffyhairgraysonA few days later his neck exploded with swollen lymph nodes. I called her back and she still thought it was because of his ear infection. After the course of antibiotics was done his lymph nodes continue to grow and multiply. At this point, my mama bear starts to show up. There is something else going on. I pushed for blood work and oncology. He had blood work done 4 times (once at birth and 3 times since October). The first two times in November were all within "normal" range and consistent with the numbers done at birth. The third time, Dec 5th, there were lots of changes in his blood work. It concerned me because the rest had been consistent. Even though the change was still in the "normal" range, I was concerned. the doctors have all told me not worry about it. I'm one of those that thinks every person has their "normal"

I met with the oncologist...I anxiously waited for this appointment. I thought MAYBE I would get some answers or a "it might be this...". Nope. All I got was "I'm 85%-90% sure it's not cancer." Which is great, but also frustrating at the same time.


What is going on with my baby?

I finally requested a referral to see our ENT doctor. (I couldn't just make the appointment because this was his first time seeing Dr. P.) Dr. P is wonderful. He has done my older son's cleft lip/palate surgeries for the last 5 years. I met with him and FINALLY a doctor with a plan.

<rant> Instead of all of the other ones who couldn't give me answers to what is going on with my son and never had a plan to move forward. They wanted to leave it as "We tested for this, this, this, and this. They are all negative." OK, great, but that doesn't answer why my son has chronic lymphadenopathy. </rant>

During our appointment with Dr. P we realize that G-man was never tested for cat-scratch disease.

I start thinking "Oh! Great! That HAS to be what is going on. Simple enough, just let it run it's course!!"

Nope. That's not it either. *sigh* Back to square one.

So now the plan is to do an open biopsy. They will make a small incision and take out the largest/most abnormal node and send it off to several departments for examination. Hopefully after this point we will get some answers.

I hope and pray that it is nothing serious. Some may say that I'm over reacting. I'd rather be too cautious and it be nothing, than be so laid back that we miss something.

Having a sick child and not knowing how to properly treat it is leaving me a bit helpless. Which may be why I'm advocating so much for figuring out what this is. I've had experience with misdiagnoses before, I don't want it to happen to my son.

*Coughlin, Andrew. "Pediatric Cervical Lymphadenopahty." Utmb Health. Utmb Health, 24 Sept. 2009. Web. 15 Dec. 2015.

*Read about his surgery here: G-Man's Excisional Biopsy

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