Sleepless in Maryland...help!
I have a 2 1/2 year old beautiful boy who since about 6 months of age has been somewhat of a medical mystery to us all. I'm a nurse so I'm very knowledgeable about my childrens health, or so I thought. My little guy started falling off the growth chart at around 6 months right at the time we were moving to a new town. A new peditrician sounded the alarm bells doing a myriad of tests, and found an abnormal phosphorous level and slight low PH in the blood. We had a consult at Johns Hopkins and renal tubular acidosis was ruled out. Most other labs were normal so we were eventually referred to a Pediatric Endocriniologist who tested him for growth hormone difiiciency(normal) and other endocrine disorders. His gluten test (although I don't know what immunoglobins were tested) was normal.
This past winter, he was in nursery school for the first time (he also has an older school aged sister and 1 year old sister). He had many colds, with a pretty chronic runny nose and cough. Everytime he had a cold,the drainage went straight to his ears and he required abx for ear infections. All of this quite frankly did not seem too out of place having had an older child who fought through all the bugs as she entered class with other kids. He has never been an eater, much unlike my other two kids. He continued not to be a big eater but preferring to drink milk, almost exclusive of eating. A bite here, and there, but not much else. He is still trending in the 5% although he started for the 1st 6 months in the 50-75%. The good news is he is not falling off the chart but trending stably since 6 months.
A few months ago my newborn and he had a virus which seemed to cause pretty stinky, diarrhea which lasted in upwards of a week. I requested a stool cultural on both but the urgent care doctor started thinking of CF based on his symptoms: small stature, failure to thrive (marginally), chronic sinus stuff with ear infections...etc. He ordered fat content on stool. It supposedly came back ok.
Until I saw the endo on Friday and he had labs with him. It appears Jonah does have fat in his stools. How much I was too shocked to ask on Friday. He also has had hypoglycemia on his two last lab draws. I'm disappointed that no one was able to piece this together until now...why is it that they didn't request repeat labs on a 2 year old with low blood sugar levels?
Anyway, the endo got quite concerned on Friday and now wants us to see a CF center for a sweat test. My husband works at Hopkins and we plan to call tomorrow to set up; I pray it's not too far out as I'm having trouble keeping it together. I'm a nervous, crying wreck. I spent all night kissing my little guy, trying to see if he tasted salty not being able to decide whether he was or not. He's a sweater, he tasted a bit salty but no more than I'd expect. Anyway, I'm so scared, and would appreciate any information you all can give me. I know it seems like I'm asking you to tell me he's going to be ok, he doesn't have CF. I'm still hoping to have the Celiac Dz test repeated as his symptoms really mimic CD as much as CF. Especially with the fact that he doesn't like to eat. Thanks all.