Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Teddy’s Croup

Or, Sarah tries to explain why this croup isn’t the same as your kid’s croup.

Last night, Teddy and I went to the ER for Teddy’s 12th (14th?) round of croup.

“Why don’t you just take him out in the cold air/use cool mist?”
“Can’t you get a nebulizer?”
“Why don’t you use an inhaler/albuterol?”
“Who goes to the ER for croup?”

That’s what I hear basically every time we do this.

This blog attempts to answer those questions and more.

First, Teddy’s croup tends to be moderate or severe. The croup that most kids get, and with which most parents are familiar, is mild croup. Bet you didn’t know there is actually a rating scale for croup. 🙂  http://www.rch.org.au/clinicalguide/guideline_index/croup_laryngotracheobronchitis/   and https://www.mja.com.au/journal/2003/179/7/croup-assessment-and-evidence-based-management     Croup is basically swelling/inflammation of certain parts of the airway because of a virus (a variety of viruses). The airway gets inflamed and creates that barking cough sound.

Teddy has subglottal stenosis (narrowing of airway below vocal cords). His stenosis is mild and of unknown cause (potentially damage from previous intubations, but surgical notes don’t really give any reason to suspect this – but neither do they give reason to suspect he was born with it). But his ENT thinks it plays a role here – likely in why his croup gets so severe so fast (more on that later), but not necessarily in why he gets it so darn often. Nobody has any current theories about that. Likely a combination of immune suppression plus the stenosis.

The signs I look for at home as a signal that we should head to the ER are:
– Lethargy. Is he putting so much effort into breathing that he has no energy for anything else?
– Stridor at rest. Does he have stridor (noisy breathing – not wheezing) when resting?
– Retractions. Are parts of his body sucking in when he’s trying to breathe? Like the spaces between his ribs, around his collarbone or his sternum?
– Drooling.

What we don’t look at: o2 saturation. Evidently, O2 sats are a poor measure of severity of croup. http://www.aafp.org/afp/2004/0201/p535.html    By the time O2 sats are low enough to cause concern with croup, it’s really super bad. You don’t want to be home. The one time we showed up in the ER with sats in the 80s with croup, they became a virtual tornado of activity, completely skipping the rest of triage and running to meet the respiratory therapist. I waited a bit too long that time to go in.

Second, why don’t we treat it at home like normal people? Well, that’s a two part answer.  To start, “normal” at home treatments have been proven to be completely ineffective. Despite every other medical website out there recommending it, cool mist has been proven ineffective. (https://www.ncbi.nlm.nih.gov/pubmed/12208675)  Cold air can be mildly effective.

Also, Albuterol isn’t a treatment for croup. Albuterol is a bronchodialater that relaxes muscles. That works great for asthma, COPD, etc. but spasming muscles aren’t what cause croup – it’s tissue inflammation. “The use of albuterol in the treatment… of croup is ineffective and can delay needed care. http://www.medscape.com/viewarticle/708193_3   “Albuterol breathing treatments don’t help the voice box swelling caused by croup, and hence don’t make the stridor better. Albuterol is effective for treating the wheezing associated with asthma or reactive airway disease.”  http://childrensmd.org/browse-by-age-group/newborn-infants/croup-hit/

We do have a nebulizer at home and I can give him saline treatments with it. However, that isn’t usually a very realistic solution.

Teddy’s croup goes like this, every single time: Go to bed, perfectly healthy. Wake up some time in the wee hours and have a slight horse cough. Mom gets up and gets the prednisolone. Within the space of 20-30 minutes, he is lethargic, has stridor when resting, retracts while breathing, etc., and we end up having to go to the ER. Usually, he has also vomited the steroid (the severe coughing gets him gaggy). There just isn’t time to try a saline nebulizer treatment, or whatever else. When we see those symptoms, we are to go to the ER.

Third, why do wego to the ER? Well for one, the meds he needs to treat the croup aren’t available for home use. I can give him the relatively mild prednisolone at home, but in the ER, he can get a much stronger steroid. The nebulizer meds they use to treat him are similarly only available in the hospital – not at home. (http://www.rch.org.au/clinicalguide/guideline_index/croup_laryngotracheobronchitis/)

The main reason we go to the ER – and the reason why the meds aren’t available at home – is that by the time you’re bad enough to need the big meds, you’re bad enough to NEED to be in a hospital. Airway collapse is a legitimate concern with severe croup, and it’s important to be somewhere where there are people who can intubate if things get bad enough.

*You cannot/should not treat moderate/severe croup at home.*

He has been able to stay home a few times with croup. We’ve given the prednisolone and kept him comfortable and calm and it didn’t get worse. It stayed at mild croup. That’s totally treatable at home, just like normal kids. 🙂

But even normal kids should go the ER if their croup progresses to include the symptoms I listed above. Severe croup is not common at all, but it isn’t anything to mess around with.

So hopefully that explains why Teddy goes to the ER for croup.

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After my last post, I ended up messaging Dr. Linn Dyken back, thanking her for her prompt response. (5 weeks)

I then asked her if she could recommend a colleague who is also a sleep specialist. I asked for clarification on the ADHD issue. (More specifically, I asked of educational setting changes one’s diagnosis/who a person is. Does a person have a diagnosable condition, regardless of setting, or do their diagnoses change based on where they are? And I suspect the answer is more “varies depending on where they are” than she is willing to admit, lol.)

I got a response with zero answers but the doctor kiss-off of “Teddy is lucky to have such a strong advocate.”

I did, however, finally figure out how to get ahold of the neuropsych doctor who we saw initially (tip: don’t call CDD because they’ll pretend they have NO IDEA who that person is). I laid out the whole thing for her. a) I didn’t feel we still had any real answers – we had some pieces, but nobody seemed to be interested in putting them together  b) Our experience at CDD was very frustrating and we are never ever returning, does she have ideas on where else to go  c) What are our next steps

She wrote back, a 5 ish paragraph email, within 8 hours.

Neurocognitive Deficit is a generic term that means some cognitive issues are present, but given mixed findings and due to age, there isn’t anything more specific we can say at this time. She thinks/hopes as he gets older, we’ll be able to better suss out what the actual problem is, and hopes to see him annually or semi annually.

She expressed general uncertainty about all his other “things.” CDD said he doesn’t fit the criteria for ASD (but I’m not sure I believe them), but he’s confusing enough for them at this point that it’s hard to say if he has something like OCD or an anxiety disorder, or if it’s just his age (which I don’t think it is – he’s not really like other kids his age), or if it’s just ADHD, which can cause similar symptoms in some children. So an official, “I’m really not sure, but let’s keep watching and see if we can figure it out” is better than “kiss off.”

Also, she said he absolutely fits the criteria for ADHD and no, being homeschooled plays no role. She was waiting to read the reports from others, and her main hesitation is age. She doesn’t prefer to diagnose kids this young. That said, she did end up making that diagnosis and sees this as his prime issue at this time. The OT at CDD seemed to agree, blaming lack of attention and focus for his very poor fine motor skills. She thinks there is more than just ADHD going on, but addressing that first will make it easier to sort out the other things. But her only idea for addressing it was meds, and I’m not sure I’m willing to go there. There has to be someone who can help us without meds. Who that may be… I don’t know.

So, here is the state of “special needs” help in Iowa. The two main multi-disciplinary places are ChildServe and CDD. I’ve never met a family who was happy with CDD. The doctors I know at UI generally all agree that it’s awful. There are some good people there. But the overall experience, and the developmental peds in particular, are not good at all. Then there’s ChildServe, which also has good parts. But most parents I know walk away from their therapy experiences at CS feeling very dissatisfied. There is also a general sense among parents I talk to that ChildServe overdiagnoses kids to funnel them into therapy because that’s where they make their money. (That was certainly our experience.) (And I’ve talked to a few friends informally who formally worked at CS who have said much the same thing. We’re using Blank Peds Therapy right now, but there’s no overall holistic “what’s going on with this kid” sense I get there. He didn’t walk in with specific diagnoses, and I don’t get the sense he’ll walk out with anything, either.

And not to get all hung up on labels, but I personally think it’s easier to deal with something when you know what it is you’re dealing with. I want to be all “oh, it doesn’t matter what you call it…” but it does. Because how you treat it kind of depends on what the problem is. (I mean, all the ST in the world isn’t going to help if the problem behind your speech difficulties is untreated hearing loss, for example. Teddy can’t answer questions very well – but we would treat that differently if it was stubbornness, vs hearing issue, vs auditory processing issue, vs language issue, vs attention issue.)

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