I’m a firm believer that if you go to the doctor enough they are going to find things wrong with you. I think that is why people with chronic illness sometimes end up with some many different diagnosis. Not because they are out there looking for things to be wrong with them, but just because we probably all have minor things wrong with us that we ignore or dont cause big issues. But if you dig deep enough, or you have enough little/big things, it all piles into misery. That is sort of what has happened with this latest diagnosis, and why I want to talk about the parent/patients responsibility in paying attention.
If your doctor or hospital offers patient portals to your medical records do it! I know there are a lot of concerns out there about privacy. So let’s be honest. Your records are already electronic. They are out there, yes they can be hacked, and that is a risk that exists in today’s world. You are simply getting access to what already exists when you use the portal. We’ve used the online portal for a couple of years now, and use it for connecting with doctors and nurses, reviewing results, and asking for prescription refills. I’m a fan.
Lexi had surgery two weeks ago now, and just with the nature of cystic fibrosis results will come trailing in for about six weeks. Over the course of the last sixteen years, with asthma and CF, Lexi has had A LOT of x-rays. The chest x-rays are always ordered to check her lungs, and the doctors ordering them are always looking at them from a respiratory view. There are always notes comparing the lungs from one x-ray to another and calling out areas of concern. But one of the other things that the x-ray sees, that the radiologist looks at is the spine. I’ve been looking at her results, and because she does have trapped air and is culturing some things, I have been reading each line item a little closer. That is when I saw this…
Scoliosis. So I found that a little bit alarming. Alarming maybe isn’t the right word. Surprising maybe. No doctor has ever mentioned it to us, and it was just there, in the comments, no other notes. Thanks to the portal I was then able to start to go back through her other x-rays. Sure enough another radiologist noted a dextroconvexity thoracolumbar spine. In most of the x-rays I reviewed there were notes about the spine. Dr. Google was next on my radar (not a picture of Lexi’s spine)…
So I have to say this is one of the disadvantages of a portal. Sometimes you are going to find out bad news before the doctor has a chance to call you. I have seen bad test results in the portal, uploaded by a lab on a Sunday afternoon, and not had the doctor call me until Monday. So if you are an alarmist looking at test results might not be what’s best for you. Sometimes it might be really bad news. If you are going to immediately go to Dr. Google and be convinced that you are going to die from a hang nail then don’t get access. Obviously I’m making light of this with humor, but seriously sometimes the results aren’t great. But I have faith that if it is ever something really bad someone is going to escalate it and I would get a call before I’d read about it. So, if Lexi has a curve in her spine, she has always had a curve in her spine, and me knowing about it doesn’t change things at all.
But knowledge is power so what next? One of the (many) downfalls of having a child with chronic illness, is that you just don’t always make it to those pediatrician well visits. Lexi hasn’t had a well visit in years. She goes to doctors and clinics on a regular schedule. If she gets any infection we call the CF clinic. We don’t call a family doctor. So the normal things, like let me check your spine, that a pediatrician would do have been missed. That is how this was missed. I’m sure other doctors probably saw this note, and someone just assumed that someone had talked to us about it.
I did message Lexi’s pediatrician, through the portal, and she pulled up the radiologist notes for the x-rays I pointed her towards. Lexi’s pediatrician is awesome. It takes a smart doctor to stick with a complex kid. She met Lexi in the hospital the day after Lexi was born. Lexi’s pediatrician didn’t miss this. It just happened. She saw the notes that I was talking about, and absolutely validated that I was reading everything the right way. She is going to request actual copies of the x-ray so that she can see the curve, and then decide if we need to do a scoliosis scan. We will know more next week. Brooklyn has a well visit with her next Friday, so a good time to follow-up (and yes we will check Bs spine for straightness).
In the greater scheme of things why spend time on this new information? It could explain a couple of things that we could get some quality of life improvements from. Lexi’s grandma had a spinal fusion for scoliosis in her 20s. No, I don’t anticipate Lexi’s back is anywhere near bad like that, because surely it would have raised some flags. But, clearly there is a family history. Lexi has always complained of back pain. We’ve dismissed this because let’s be honest she coughs ALL THE TIME! When anyone coughs that much, and has GI issues, they can have some core and back pain.
Today Lexi had physical therapy, and with this new information her PT did a scoliosis exam. Different then anything she’s done before because she focused on her back. Positive note, she did confirm that Lexi’s hips are in alignment. Negative note, she said that her back was all knots. But this is good news, because now we know some new techniques that Lexi can use to try and start loosening those muscles. While Lexi did some heat therapy, and stretching, her PT and I picked out a heat massager that I can get for home to help with the tightness. And Lexi starts back twice per week to PT next week, so good timing all around. Here are the two items that I ordered with the PTs recommendation. Unsure of which Lexi will like the most, but wanted something that would work larger areas. I can return one or both if she doesn’t find benefit.
This one currently on sale 63% off:
Heating Pad for Neck and Shoulders – Heat Wrap with Adjustable Heated Levels & Vibration Massage for Neck and Shoulder Back Pain Relief, Heating Pad with Auto Shut Off
This one is a bit pricey:
INTEY Neck & Back Massager, Kneading Rolling Shiatsu Massage Seat with 12 Nodes, Massage Chair Pad with 4 Functional Areas: Neck, Full Back, Seat Virbration, Heat (Extra Bonus: 1 Car Adapter)
So what does Lexi think about all this? VALIDATED! She says she knew her back shouldn’t hurt like that. She’s only 16. Mom fail. She complained a lot, and we did the old fashioned “suck it up buttercup.” Yes, in our house we say “suck it up buttercup.” It is a really nice way to say stop complaining, and teenagers complain a lot! I will admit though that now she is complaining about her back constantly. Human nature to focus on something after people have talked about it being “wrong.” The mean mom in me might have told her that it doesn’t hurt more now then it did two days ago, so to just stop complaining. She told me to give her a week to whine about it and she’d move on. Compromise? No, I’m not a mean mom, but I do think sometimes if your dealt a crappy hand you can’t spend your life complaining. You have to figure out how to maneuver through the life you have. Even if that is really hard sometimes.
As Lexi’s parent it is my job to look at her health collectively. I have to understand, and teach her, that each specialist that she goes to is looking at her from their lens. The lens of what they specialize in. It would be wonderful to trust one doctor to have a full awareness of the entire complexity of a person with chronic illness, but I don’t think it’s realistic. Our cystic fibrosis care teams try, and spend a lot of time with us. Pediatricians see our kids, but they see thousands of kids. We see our kids everyday. We have to take on the accountability of educating ourselves, keeping ourselves informed, and asking questions. We have that responsibility when taking care of ourselves, and when looking after those in our care. We also have to give ourselves a little bit of grace when we drop the ball here or there. We are only human, and complex things are by definition complicated.
Thanks for reading. Thanks for following.