What the doctors said

Patrick weighs 14.8 kilograms, 15 with clothes on, and is exactly 3 feet tall. I know that because he was weighed and measured no fewer than 6 times in the last month and a half. We were in doctor’s offices that often.

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Patrick prefers to spend that in-office waiting time inside the cabinets under the sink.

And I have sat on this post until I had all the doctor’s input to make sure that what I was posting was accurate.

So let’s rewind in time a bit. Let’s go back to November when the clinic that does Patrick’s speech therapy finally got around to billing the services that he received at the end of summer, supposedly with new billing codes that would clear the insurance company because they met the criteria AND were supposed to have gone through the preauthorization process.

Well, they didn’t. They came back denied. My case manager couldn’t get them to go through and so in the middle of December I found myself suddenly trying to understand the nuances of speech diagnoses. Finally, I got to the point where I realized that we were going to need to change providers to free ourselves of the baggage of two years of partial diagnoses and billing errors. And, as my research had turned up that it is not only possible, but quite probable, that Patrick’s speech problems are neurological in nature, and that that is the only diagnosis that will persuade our insurance to pay for speech therapy, I decided that 2 and a half years after his probable injury, it was time for Patrick to see a neurologist. If we could get a neurological diagnosis, it would be so much easier for a new provider to bill the way the insurance wants.

And so, I called and left a message for Patrick’s pediatrician requesting a referral. And then I called neurology, where I found out that Patrick was considered an existing patient (and probably didn’t need a referral.) And, because it was quiet between Christmas and New Years, they were able to squeeze us in to see a Physician’s Assistant that same week.

What a strange conversation that was. The PA had reviewed Patrick’s notes from several years before where Neuro had come to consult after his cardiac arrest and given Patrick an all-clear, but call us if things change, diagnosis.

And then here we were. She said, “Well his movements are symmetrical” and we said “But his development has not been, oh and by the way, take a look at his right foot.” She watched him write. She listened to him talk. She measured his head, which she said was quite small (which we knew but had attributed to Short Gut and not the brain injury). As she realized the extent of Patrick’s developmental delays and other problems, she seems truly surprised that we had made it two and a half years without coming back to neurology sooner.

But, when we explained that he’d had a team of early intervention therapists and private therapies and an amazing rehabilitation specialist, she agreed that we’d been doing everything right.

In fact, the only that that surprised and scared me was when she asked if Patrick had been having seizures and explained that he was likely at risk for them.

She didn’t question at all that Patrick was showing all the signs of a brain injury. In fact, she explored the option of making the diagnosis then and there without any further testing. But, in the end, the attending doctor wanted an MRI and we agreed it was probably time. Especially when she explained that now that Patrick was 3, he would qualify for “conscious sedation” instead of general anesthesia. Although still risky, it meant no intubation and a much easier recovery.

And so, we went ahead. That test was done just last Monday and went about as smoothly as could be hoped. The only catch was that, even though I know I said it more than once, it didn’t sink in when I said that Patrick needed TPN or something like it during the test, that they’d need to order a replacement for the TPN. But they got it done and he got a lovely nap and a braver-than-usual-though-clumsy-and-stupid afternoon.

And last Friday I finally got the results, which were just what we expected. Patrick does indeed have an anoxic brain injury. It was caused by a lack of oxygen to his brain during the 15 minutes that he needed CPR. It has a “watershed distribution” which Wikipedia has taught me means that the injuries are on the far ends of the blood supply. It’s the type of injury often caused by a stroke and that would explain easily why the muscles tone and his speech and fine motor skills have all been affected.

And…. That is all I will know until we can meet with the attending in person, who unfortunately didn’t have an appointment available in Salt Lake until May. So, we’re on the waiting list, but we aren’t anxious enough to travel to his other office because, well, it doesn’t change much.

We are just getting a name for what we already knew.

Which leads me to our next Dr.’s appointment. Remember the developmental pediatrician I mentioned in Seattle? Well, after hearing the resident’s report, he came in and talked to us. We told him all the same things about Patrick’s motor skills and speech skills being delayed, about his sometimes spotty judgment, and the other problems that we attribute to a suspected brain injury. While he listened, he felt the muscle tone in Patrick’s legs, tested his reflexes, and then asked if Patrick would walk for him.

So we took our bare-legged little boy out into the hall and let him walk and run.

After just a few minutes, the doctor brought us back to the room and told us not to listen to our emotional response to the words he was about to use. He told us he wasn’t telling us anything we didn’t already know about, but he was going to give it a name that we could use to make it easier for Patrick to get services to help his development.

The diagnosis: Cerebral Palsy. His form is called “diplegia” meaning that it affects his legs. And it is “of the mild to moderate variety.”

Now, before you start googling and find all kinds of pictures of children with severe, crippling muscle spasticity, let me give you a definition from the National Institute of Neurological Disorders and Stroke:

“The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time.”

Did you catch that? Cerebral Palsy means simply that before the age of 3, a child had neurological damage that permanently affects the muscles and coordination of the body. It is, by definition, NON-PROGRESSIVE. That means that it is what it is. It won’t get worse.

When I ran this diagnosis past Patrick’s rehabilitation specialist, she defined it as an injury to the developing brain that affects the muscles and does not get worse over time.

In other words, we have been given a name for what we already knew. And because we have a name – a name that is well-known and carries a pretty powerful emotional response – it will be easier to get therapy to help Patrick learn to walk and to talk to the best of his ability.

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See that turn inward turn in his feet? The way his right toe drops and points? That’s what the doctor called diplegia and is the reason he wears a brace.

I wanted to get some other opinions before we published this too broadly. Patrick had an appointment with his GI and with his Rehabilitationist right after we got home. And I wanted their opinions, too, before we subjected you to whatever just happened in your mind when you read those words.

Dr. Jackson, the GI, sent a resident in to do a workup first. And so he was forewarned and I didn’t get to see his initial response. He was hesitant at first to consider the diagnosis because the case is so mild. However, he watched Patrick walk and felt the muscles in his legs and agreed that, although it doesn’t tell us much, that the diagnosis fit and, as it might help get Patrick needed help, he agreed with it.

The rehabilitationist was even more hesitant because, she said, it was such a broad, general diagnosis. And, on the spectrum of possible symptoms, Patrick’s are SO mild that it almost doesn’t merit giving it a name. She said that her hope would be to give more specific diagnoses like she has been doing like, for example, dystonia to describe the muscles in his legs and apraxia to describe his speech. But, after some thought, she too agreed that it could be a helpful diagnosis to have.

And so, until we can meet with neurology and get a name for the actual injury and get their opinion, this is the name we’ll be using.

So that’s not what you expected I’d be writing about the doctors saying, is it? In fact, on the gastrointestinal/transplant front, we don’t really have new news. Patrick is probably the healthiest he’s ever been. He’s not gaining weight quickly, but he’s getting taller.  His liver isn’t better, but it’s not worse and according to labs, he’s borderline healthy. Despite an obscene number of drug shortages of crucial TPN nutrients, Patrick seems to be able to absorb what he needs from the half-dozen nutritional supplements I’m giving him. (Which is only bad news in that I HATE having to give him a half dozen nurtritional supplements every day: some crushed, some as drops, some in suspensions that stain your fingers.)

I asked the transplant dietician if I should be trying harder to feed Patrick, either orally or with his g-tube. She said that she didn’t see any point in pushing things now that might make things worse. He is happy and healthy and likes trying new foods. And that is what will benefit him most after transplant.

The transplant team was pleased with where Patrick was and said to stay the course.

Patrick’s GI back home was happy, too, and gave Patrick a nifty pair of winter gloves that he faithfully wears for hours at a time because they came from “Ko-ko Ja-ja” (Doctor Jackson).

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Napping, gloves on, on the way home from Dr. Jackson’s office.

And we are armed with some better neurological information that is helping us to get Patrick the therapy he needs.

I won’t go into much public detail about the issues I’ve had with billing on Patrick’s therapies. Suffice it to say that Primary Children’s Outpatient Rehab in Taylorsville has lost a speech patient due to their billing practices. I think, after months of battle, I’ve got this sorted out so our insurance can pay those bills, instead of us getting stuck with them. We’re hoping that we don’t also have to change physical therapists, but time will tell.

Meanwhile, I think I’ve found a wonderful new speech therapist for Patrick. Her office is a little farther away, but it’s a small, family-run office. The therapist has in-hospital experience with medically-complicated children AND is very focused on the role that overall development plays in developing speech. Patrick enjoyed his evaluation and so we hope that all goes smoothly with the pre-authorization process and we can start therapy soon.

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