For those who are following the saga of Conner’s mystery illness - here’s an update:
He’s doing about the same. He has managed to gain a little weight back, so he’s up to 125 now (he was 135 last April when all this started, the lowest he got to that we know of was 118.) He has noticed his pain has definite patterns in time of day that it hurts. Some weeks there are also patterns in days that it hurts. But the patterns change about the time he thinks he’s got them figured out. We’ve cut out a lot of foods that we know hurt him: all dairy, corn, sweet potatoes, carrots, asparagus, Brussels sprouts, bananas, oranges, grapefruits. Sugar and tomato are limited. Hemp oil and his supplements from the naturopath are definitely helping. I’m pretty sure they’re all that’s kept him alive and out of the hospital to be very honest. At our last visit to the Naturopath she said his gallbladder, pancreas, and kidneys are problems and that he’s anemic.
So, we’re trying new “regular” doctors too (not quitting the Naturopath) - a friend told me about the GI that her daughter sees. He actually listens and is willing to think outside the box and run tests for not typical things. So we’ve switched to him. Sadly, he has no open appointments until the end of April, but we’re on the wait list and I keep calling to see if anything has opened up.
Also - Conner has started to have numbness in his fingertips so we want to get that checked out. I found another pediatrician’s office Friday and they actually had an opening for a new patient with Dr. Crawford, so of course we took it. I printed off all Conner’s previous blood work results and took it with us. She was quite taken aback that the Lyme testing was never followed up on when both tests say “Abnormal” and “further testing is needed.” I didn’t have access to those tests till recently so I didn’t see that part. The office we were going to told me his Lyme tests showed nothing to worry about. Dr. Crawford listened to us, really listened, and she really studied him. She’d ask questions, listen to our answers, and stare at him really hard like you do a puzzle you’re trying to find the missing piece to, then she’d say, “hmmmm,” and make a bunch of notes on her computer.
She agrees that Conner’s illness isn’t some random bunch of symptoms that equal IBS. She kinda rolled her eyes and huffed a little bit when I told her that’s what the first GI doctor said he had and was just going to leave it at that. Dr. Crawford said, “There’s SOMETHING causing this. And we’re going to figure it out.” She took three vials of blood and a urine sample. She’s referred him to neurology for the numbness (they also don’t have openings till late April) and she wants us to keep the appointment with the new GI to get another set of eyes on him.
It was refreshing to have someone listen to us and not brush us off. The only other one who really listens is the naturopath, but she can’t tell us why all this is going on, she can just help treat his symptoms. So maybe, just maybe we’ll get this figured out yet. It’ll be a year in April. A year that my son has spent mostly in bed in pain just hoping and praying he’ll get well as suddenly as he got sick. Just hoping to feel better enough to go to school for a full week. Hoping for hope.
So, a week after getting blood drawn and three consecutive days of calling to find out results - the nurse said as far as she could see all of his tests came back normal. Which is good, I guess, but at the same time it’s just more non-answers. His Lyme tests were abnormal before but apparently are normal now. I haven’t seen the results yet since they’re not uploaded to the patient portal yet. We don’t see the neurologist till April 19th and GI till April 20th. So we wait, and pray more, and make sure he takes his supplements from the Naturopath and drinks a lot and rests. He’s doing his best to keep up with school. He hates missing school and I know he feels like he’s missing out on life right now. It’s hard on all of us. But we won’t give up and we *will* figure this out.