Viral Issues in Transplant Recipients

Just an informational post because the husband was having trouble coherently explaining this. 🙂

Solid organ transplant recipients obviously take immune suppressive drugs and that makes them more vulnerable to essentially everything that the immune system would usually fight. Viruses. Bacterial infections. Cancers.

A handful of viruses in particular tend to cause more trouble than others – mostly, the type that hang out in your body. A typical person is exposed to these viruses, often doesn’t develop any symptoms – or just mild cold symptoms, and then the virus lies in their body, dormant, for all time. Sometimes, even in healthy people, the viruses can be reactivated. Transplant recipients, because of the suppressed immune system, are more prone to viral reactivation. Also, if they weren’t exposed pre-transplant (obviously more common in kids than adults), their first encounter with one of these viruses can be troublesome.

This article gives a nice run down, if you’re interested in more detailed information using longer words:

We monitor Teddy for three of these viruses on a regular basis (technically, we monitor viral load). Epstein Barr Virus (EBV), Cytomegalovirus (CMV) and BK Virus (which doesn’t actually stand for something – it’s just the initials of the first guy who ever had it).

CMV. I don’t know what to say definitively about Teddy and CMV right now because we’re not entirely sure what’s going on. It looks like his CMV levels go UP every time he has another illness. That’s not ideal, but as long as it comes back down every time, it’s better than not coming down. One of the things that was going on when he was admitted in the spring was that his CMV level was pretty high. Since then, we’ve noticed slight bumps associated with other illnesses. The risks with CMV infection are numerous. Primarily, it can cause rejection. It can also permanently damage the kidney. CMV viremia (for simplicity’s sake, “viremia” would be “high” viral load – what he had in the spring) carries with it a fairly scary mortality rate. CMV is treated by lowering immune suppression and taking a fairly nasty antiviral medication called valgancyclovir, which really does a number on your bone marrow (making you very anemic very quick, at least if you’re Teddy).

EBV. I want to say it was the first year post transplant, T got EBV for the first time. There were a lot of other things going on, and he ended up getting a tonsillectomy and a CT scan – primarily because the biggest risk factor with EBV in an immune suppressed patient is development of PTLD. PTLD – the acronym that strikes fear in the hearts of transplant moms everywhere. PTLD is a pretty aggressive cancer that transplant patients get with an awful mortality rate. It’s pretty rare… but transplant moms are so far past “rare” already – I mean, peds renal transplants are ALSO rare. So at our house, we tend to refer to EBV as “the scary cancer virus.”

BK virus. I know the LEAST about BK because we’ve never had to deal with it. BK virus primarily affects the kidney – causing permanent damage and/or graft loss.


Teddy is never going to graduate ever

<note, that’s my sarcasm talking>

37% of children with mild hearing loss failed a grade by 3rd grade.

35% of teens with ADHD drop out of school.
30% of teens with ADHD have failed a grade.

60% of kidney transplant kids have had to repeat at least one grade by the time they are teens (this study wasn’t exclusive to kids who had been diagnosed as infants or in early childhood).

Another diagnosis I’m not quite ready to talk about yet has a 61% likelihood of failing a grade, with 83% failing to meet academic standards to move on, but being moved on socially.

Add those all up. (which, yes, I know you would never ever do because that’s not how it works.) This kid is DOOMED.

<insert emoticon of choice here to indicate that I’m being sarcastic and kind of humorous, and not serious.>

OK, but being serious here for a minute. Look at what he’s working against. Look at how much the deck is stacked against him.

Going along with all those statistics are others I didn’t report. What % in each case develops depression or a conduct disorder from being so discouraged, from being ostracized, from always being the bad kid, from feeling stupid. Those numbers are also huge – higher than the percent of kids who have failed or been held back – because so many of these kids eek by academically but struggle – academically and socially and with self-esteem and self-worth and by the time they hit junior high, they already perceive of themselves as being bad and friendless.

Now why on EARTH would I ever want to put him in a public school? With those kind of statistics? I truly don’t understand the bais doctors have towards public school.

Guess what? At home, he doesn’t feel like a bad kid. At home, he experiences success. At home, he is challenged but not frustrated. If he doesn’t get something, we have the freedom to try again, to try a new way, to put it off for a while and try again later. At home, I can talk to him one on one and he doesn’t have to struggle to hear and see and focus with a classroom full of other wiggly kids. He stands the GREATEST chance of success at home.

And at home, he’ll never fail. Ever. His education might look vastly different than it did for his siblings, but that’s OK.

Hearing Test, Finally Concrete Answers

Well, Teddy had his, I don’t know, 300th hearing test this week. He’s never passed one. Ever. He passed the sedated ABR but he’s never passed an awake hearing test in the booth. And the question has always been whether he’s failing the tests because he can’t hear, whether he’s failing the tests because he can’t understand or follow the instructions, or whether he’s failing the tests because he isn’t paying attention. And if it’s that he can’t hear, is it because he has fluid in his ears or because he has an unrelated hearing loss? We’ve spent a LOT of time at Speech Therapy working on following verbal instructions. And he’s older. It isn’t allergy season and he doesn’t have a cold. We had high hopes this time.

And it worked. He followed the instructions. He remained engaged.

He failed.

But it was a good, solid fail. He definitely has a hearing loss. He didn’t have any visible fluid.

Mild. Both ears. Something in his middle ear. When she stimulates the cochlea directly, he hears perfect.

She said she wouldn’t give hearing aids to a homeschool kid with a mild loss at his age and likely level of cooperation.

But the more I read… the more I’m pro-hearing aid. A huge percent of  learning happens accidentally, by overhearing things, vs being specifically taught them. It’s hard to know if this is attributable to his hearing loss, but man, do I notice this with him. The things that kids have usually managed to pick up just from being alive… he hasn’t picked up.

Kids with an untreated mild hearing loss are so much more likely to be held back a grade than their peers… that says to me that treating would be beneficial.

Especially in a kid who already has SO MUCH working against him. I can’t do anything about the kidney failure/transplant. I can’t do anything about the drug side effects. I can do something about this.

So we have an appointment with Otolaryngology and Audiology in January in Iowa City. We’ll see what they say and go from there.

“When I was a baby…”

So. Last night, Teddy was sleepy and asking me in a sleepy voice to tell him about when he was a baby. What else did I do when I was a baby? (It started when he asked me when we got his IV pole.) So this led to lots of discussion about his infancy. Most of which is depressing. Every third thing I said was that he really liked to snuggle, but he didn’t want to hear that over and over, so we talked about hospital, and dialysis, and Nurse Jen, and Dr Jetton, and driving to Iowa City, and taking baths, and getting his tube, and getting other tubes and getting them out. We looked at pictures on my phone. 80% of which are in the hospital. And we talked about a lot of non hospital stuff, like that he loved Genna and would just stare at her all day. But man, so much of his life happened in the hospital. Heck, my favorite Funny Teddy moments are all medical-related. And it’s fine. It’s his life. I need to get past always feeling sad about his early years because I don’t want him to feel sad about them.
So today we’ve received another packet from the government about Teddy (it’s related to Medicaid). “How has this disability affected your life?” Also, I have less than an inch of space to answer that question.
How HASN’T being born with renal failure affected his life? I mean… there isn’t a single aspect of his life TODAY that isn’t directly impacted by that. Developmental delays. Sensory processing disorder. Eating. Balance and body awareness issues. sleep. speech issues. adhd. cognitive issues. anxiety. motor delays. Well, OK. The heart defect and the subglottic stenosis aren’t likely related. Do you suppose “in every way” would suffice? I don’t even understand this question – isn’t the nature of disability such that it affects your life fairly completely? Especially if you’re born with it? It’s like saying “how has being Caucasian affected your life?”

Croup, apnea, and hearing

Soooo… in my ongoing effort to keep this blog a place where I can go to remember T’s personal history, while also keeping friends/family current, here is an update.

T’s been getting croup every month since May. May, June, July, and August were all mild enough to only require a few days of prednisone but not ER. They mostly started in the MORNING, which means I can get on top of it with pred before night. (And yes, croup is actually worse at night, your body’s natural levels of something I’ve forgotten the name of lower at night, and that lets croup get worse. Will be discussing with God in the future.)

About Oct 10, I allowed myself to observe (in my head, not out loud, I’m not THAT stupid) that he hadn’t had croup in September. Oct 20, he had the worst croup episode to date. *note to self: never notice anything ever again*

This is from my Facebook: “So. This morning. T woke up at 5ish with a slightly stridory cough. I thought ‘I will need to remember pred before bed tonight.’ About a minute later, ‘no, pred right now.’ Went potty, came back, he was REALLY struggling to breathe and decided on er. Halfway to hospital, I decided I wished we had called 911. We got to er 15/20min after he woke up with the slight cough. O2 of 70 with a doc standing by to intubate.”

That is how fast he can crash with croup.  (struggling to breathe: retractions at collarbone and ribs, drooling, unable to sit or stand, coughing with every inhale.  Then halfway to hospital, he stopped coughing. He couldn’t.)

And when I say “doc standing by,” I mean, the doctor brought a chair and sat at the foot of the bed. Out of the way of the nurses and RTs, but RIGHT THERE. For an hour or so.

And then as I run down to the bathroom after he’s stable to a) pee and b) have a moment, I pass the doc quietly saying to another doctor that that was scary. Ha. Then he came back in to tell me “that was a pretty significant episode of croup.” I think he could see the crazy in my eyes that told him I was already well aware of that.

The thing about airways, especially in kids, or so I am told, is that they’re fine until they’re not. Even once we got his airway open enough to get his sats up, he was still NPO for several hours just in case, because having an open airway at that moment still wasn’t any guarantee that he wouldn’t suddenly collapse.

So, back to otolaryngology we go. Fortunately, we already had an appointment with them because his apnea’s been markedly worse lately, and the monthly croup plus worsening apnea seemed to be related/concerning, plus the whole Teddy-cant-pass-a-hearing-test thing. Does he need tubes again? Does he need hearing aids? I’m tired of being put off by local docs, I want this solved. (detectable fluid in ears doesn’t seem to be evident every time he doesn’t pass a hearing test, so…) So we’re seeing audiology and oto in January, which was the soonest they could get us in.

PCIT experiences

I’ve heard good things about PCIT from others. Evidently it’s all about having a great provider. We did not have a great provider. I’m not sure there are any great providers in central Iowa.

The first phase involves learning to play with your kid. I read through the rules and thought, “yeah, isn’t that how you play with a kid?” but now I’m in a few groups on FB where people are trying PCIT and it’s all new to them, so maybe not. Basically, do you what they’re doing. You don’t direct, you follow. You copy, you repeat what they say, you observe aloud what they’re doing. And you don’t ask questions.

Our provider assumed I’d have a hard time with this, because I homeschool. Evidently homeschool moms just can’t stop teaching, ever.

And to a certain extent, she was right. I ask questions. Kid says “What is that?” I’m not going to answer with what it is, especially if I know they know. I answer “What do you think?” Because that’s also good parenting.

But what kept me from “passing” was a) not enough of each of these things (observing, repeating, etc) in the first 5 minutes after we arrived – when he was mostly walking around the room getting settled in. Hard to repeat their words when they aren’t talking.  and b) asking questions – because when I can’t understand him, which I often couldn’t at the time we were doing it, I guess at what he said but I ASK it. PCIT wants to you state it definitively. But that is completely counter to best practices with communication difficulties – I’m not going to assume I can speak for my child. If I don’t fully understand him, I’ll take a stab at it, but I won’t TELL HIM what he told me. That’s rude, plus it just makes him mad. “blee do”  “Do you want Playdough?”  will elicit an agreeable “yes” or “no” from him.   “You want playdough” will result in angry “NO!” and immediate frustration. NOT MY GOAL.

So fine. I was having a hard time passing, but I contend that the standards were silly.

But what made us quit was the next part.

The next part, you move to giving the child orders and enforcing consequences for not doing as told. First consequence, the time out chair. Child must sit for a certain amount of time, still and quiet. If they talk, the time starts over. If they continue to not “obey” in the time out chair, then they go into the punishment closet, which they call something else. It’s a small room where the child is placed, alone, for a period of time.

So, knowing Teddy as I do, I know how this will go down. He can’t sit still and quiet. He just isn’t  capable. So he’ll refuse to do something, then will be unable – due to a neurological condition – to sit still and quiet.

And like hell I’m locking him in a tiny closet for that. Just no.

Teddy Eating: Guess What, I have a good handle on it.

Conditions that must be present for Teddy to eat:
– Food he can handle
– A calm environment
– An environment without pressure
– A distraction
– No interruptions

Take one of these away, no eating.

I’m working on eating when away from home. It’s a struggle. Consider your typical gathering with several families eating a meal. You have:

  • Lots of noise
  • pressure to eat (eating is expected)
  • A NOT calm environment
  • Lots of interruptions

I can usually manage at larger gatherings for meals if I can take him into a different room with just us and his Kindle, if I can ward others off.

But otherwise, eating just isn’t going to happen. And that’s frustrating. It’s a skill I’m working on with him. I don’t make a big deal out of it. I don’t demand everyone adjust their lives to suit him – that isn’t very realistic. I see how he does with everyone in the same room, and if that isn’t working, I see if I can move him somewhere else quieter and with fewer interruptions/bad distractions.

Do I wish he didn’t have these requirements? Sure. I wish he would just eat like a regular kid. But wishing doesn’t make it happen, unfortunately.