Dear Doctors: Stay Focused on your Goal

I recently shared here the story of his recent eye exam. To briefly recap, this office (which has in his files a fairly extensive list of his diagnoses) has a nurse-type person come in to do the initial exam, then the doctor comes in after. The not-doctor person asked T to identify the letters, and he could not. It became unclear whether he couldn’t see them or whether he couldn’t name them – so I asked her if we could switch to shapes. She refused because “he did letters last year.”

And yes, he did do letters last year. But he’s been struggling with it this fall. Can he not remember? Can he not get his brain to make his mouth say the thing? Is he just worried that he’ll say the wrong thing and that makes it impossible to say anything? I don’t know. His brain is a total mystery some days. But, regardless, the provider digging in her heels and insisting that he could do it when he obviously wasn’t going to be able to wasn’t helping at all.

She huffed off with “I’ll let the doctor deal with it.” The doctor came in, tried twice, then I asked him if he could see the letter but couldn’t tell us its name and he nodded, and she said “oh! ok. Here!” and handed him a sheet of paper with the letters on it so he could point to the letter instead of saying it.

Perfect.

So easy.

What was the difference? The eye doctor was focused on her goal – determining T’s ability to see. The nurse person was focused on following her routine (and possibly NOT “giving in” to “stubborn kids”).

Things go better when you stay focused on your goal.

The goal of this appointment was to figure out what he can and cannot see, not to test his knowledge of the alphabet. What’s the best and easiest way to achieve that goal? Is it to insist he identify letters? Or is it to use any of the easy workarounds you have?

Even if you believe with all your heart that he CAN identify letters, does making letter identification into the central issue of the appointment actually achieve your goal of determining his visual acuity?

I’m going to tell you another story now. This one’s about speech therapy. T worked with a handful of speech therapists over the years and we weren’t ever really happy with any of them, but I couldn’t put my finger on exactly why. Then we met his current speech therapist and I understood. This speech therapist knows what her goal is and works to achieve that goal, without ALSO making him work on other hard things.

His previous speech therapist was trying to have him do things like touch a dot for each syllable – except 1:1 correspondence is ALSO hard for him, so this was like “work on this hard thing while also doing another hard thing” and we never got any results from it. (Imagine trying to learn to play the flute while ALSO having to stand on one foot on a balance beam.) Another one had him pairing gross motor with some of his exercises – and T’s a kid who has motor planning issues, so PLANNED gross motor movement requires his entire brain. That doesn’t leave much room for the speech therapy goal to be achieved.

The current speech therapist just moves on right away when something she wanted to try is just too hard – not because she doesn’t believe he can do the thing, but because she recognizes that spending her time working on motor skills (or whatever) does NOT achieve her goals of working on the speech skills. He made so much more progress with her in 12 sessions than he did in several years with other therapists.

Stay focused on your goal and minimize unnecessary obstacles.

A healthcare experience

I want to share an experience here.

I won’t talk about the absolute frustration of Teddy’s latest hospital stay, because that falls into the realm of things I somewhat expect, though am always disappointed when they happen. (But we’re not going to do an admission at Blank again unless it’s something regular-kid that doesn’t impact his kidney.)

I won’t talk about having to explain to doctors that no, the child doesn’t have a port for his subcutaneous infusion, which should be obvious simply from the word subcutaneous.

I’m going to talk about his eye exam.

Last year was the first year Teddy could do letters at his eye exam. We’d been working hard on letters, he had had a good day, it was amazing.

Yesterday was not amazing. He’s sick (uti). He’s just gotten out of the hospital a few days ago. He hasn’t done school in a week. He’s totally lost confidence in letters over the last several months and I’m not sure why. And he was uncomfortable to start with, because after every hospital stay we go through this thing where medical places make him uncomfortable.

He was doing his coping stuff – throat clearing. Coughing (yeah, that’s a fun one with all the people with perfectly normal immune systems all hyper about covid). Itchy nose. Itchy eyes. Fidgeting. Unable to look in a single direction. Asking what time it is over and over. He was just really uncomfortable. But he was trying. But he could NOT say the names of the letters. And so he said “I don’t know,” and then we couldn’t tell if he couldn’t see or if he didn’t want to say. So I asked “can you see it ok and you aren’t sure what it’s called, or you can’t see it?” “I don’t know.” (“I don’t know” is Teddy’s typical answer to any question, though he’s been getting better about this lately – his therapist came out 2 weeks ago overjoyed because he’d actually answered a question and she’d never experienced that before, lol.)

So I asked the lady (not the eye doctor, but like the vision equivalent to a dental hygenist, whatever you call that person) if we could do shapes. She looked at his file and said “no, last time we did letters.”

Um. What?

I mean, I realize that we did letters last time, but this is not last time. I want him to have glasses that are the right prescription, not be stuck with crap glasses that aren’t right because you decided he could do something that his brain has decided he cannot do today. There was absolutely zero chance that if she kept saying “what’s this letter, what’s this letter, what’s this letter,” he was suddenly going to be able to do it. ZERO CHANCE. Know what might have worked? Going with shapes, letting him do a few of those, then throwing the letters back up. That might have worked.

I was getting ready to say all of that out loud when she heaved a big sigh and said she’d “let the doctor deal with it.”

The doctor was actually amazing. She tried twice with letters, and I asked him again “can you see it ok but you just can’t remember what it’s called?” And he ANSWERED! And said yes. And the doctor said “oh, ok!” and pulled out a sheet of paper with the alphabet on it, and just had him point to the letter that matched what he saw on the screen.

See? That was so easy.

(And then she did the holding the lenses up to his eyes and looking with her flashlight thing which somehow magically gets her to the right rx for him without really needing his involvement, because frankly that’s probably the best option anyway.)

But why couldn’t the dental hygenist of the vision world lady do that? Why have to make everyone feel bad? I try SO HARD to not make Teddy feel bad about this stuff. He’s honestly trying to the best of his ability. It’s ok. Some days, he can’t remember how to write letters to save his life. I don’t know why. I don’t know if the information runs away, or if his brain can’t get the message to his hands. I just don’t know. But if it’s not happening, it’s not happening.

And, frankly, I also try not to make MYSELF feel bad about this stuff. I don’t care that he can’t do things like peers. Honestly, it’s fine. But yes, it still hurts a little to do things like explain to strangers that no, my almost 10 year old can’t seem to remember what K is called and it sucks but guess what, honey? You being stubborn about it isn’t going to make his brain and mouth work together to give you an answer. TRUST ME, I’ve tried that before.

And yeah, the lady didn’t know about the no school and the hospital and the absolute ravaging his body took from the pseudomonas and the fact that his kidney’s been knocked down a bit this time, and he might not be functioning at his best – but she shouldn’t HAVE to know all that to be able to see what’s right in front of her face – a child with special needs who was struggling to do as asked, and who WANTED to cooperate but couldn’t do what we were asking.

I don’t need people to change things around to suit him. We make it work. If lights are too bright, he sticks his head in his shirt or jacket. If there’s too many people, we let someone know we’ll be in the hall. If it’s too noisy, same. We do all that. I don’t need people to invent a new way of doing eye exams for him. But I do expect people to be kind and to use the tools they have at hand to work with us. And I expect professionals to recognize that I am the expert on my kid.

How Hard Can You Push? (or: Managing Doctor Relationships)

Advocacy for yourself and your child in a medical setting can be very difficult.

Last week, I spent a chunk of time on the phone with a friend whose child, unbeknownst to me, has been experiencing serious medical problems for quite some time now. This friend is beyond frustrated, and listening to her tell me what has been happening, I was frustrated for her.

They are in a situation where the specialist they are seeing isn’t really doing anything for her child. The child is experiencing major medical issues resulting in a greatly diminished quality of life. It’s been going on for a long time, and the doctor is stuck in “wait and see,” “let’s keep an eye on it,” and “wait for another specialist who can’t see you for a year.” It’s honestly unacceptable at this point.

She asked how hard she can push with a doctor.

And I hope that my thoughts on this were helpful to her, and I hope they’ll be helpful to you.

Before I get into the details, the short answer is this: As hard as you need to. But they also can refuse to ever see you again. But that’s not necessarily a bad thing.

The truth of the matter is, it really comes down to how you want to handle this relationship going forward. Is this a relationship you NEED? (How easily replaceable is this doctor?) Is this a relationship you want to preserve? Is this a doctor who’s really gone to bat for your kid, and you’re dealing with an unusual bump in the road, or has this doctor not done anything for your kid and has resisted you at every turn?

How you want this relationship to go is really the determining factor in how hard you can push. If you’re not sure – ask yourself this: If this next appointment doesn’t yield (the specific thing you have been pushing for), do you care if you ever see this doctor again? (To give an example from my own life, we reached this point with a specialist in T’s life. This doctor was literally the only one of his specialty in town, and I’d already met the other doctors of this specialty in the state and they weren’t amazing, so this doctor was my only shot. But he had disappointed us in several areas, and then messed up in kind of a big way. And I had reached a point where he was either going to kick it into gear, or he wasn’t worth the effort.)

If this is a relationship you are strongly motivated to maintain, then you need a gentler approach – but you can still stand up for your child, you can still insist that your questions get answered, etc.

If you’ve reached the point where you’re ready to walk if the doctor doesn’t bring any value, then you can push as hard as you need to. Stay polite. Don’t raise your voice. Stay reasonable. Plan out in advance how you want the conversation to go (at least this helps me) so that you stay on topic. But go after you goal like dog after a bone. You don’t need to be meek. You don’t need to defer to the doctor just because they have a degree. You can stay polite but still be forthright and blunt.

Use declarative statements. Ask questions. Tell them you don’t understand. (By which I mean, for example, “We are not going to pursue x treatment, as I said during our last appointment. We need to discuss alternatives. Can you explain to me why you’re so reluctant to discuss x, y, or z alternatives? I don’t understand why this hospital is unwilling to consider a treatment that is used by (name drop a large hospital that utilizes this treatment). Can you explain to me why, in your opinion, this treatment is inappropriate? I would like a referral to x hospital to discuss this alternative option with their team – can you help us with that, or do we need to pursue it on our own?”) As with any good “debate,” don’t let yourself get sidetracked by other topics. “Can we discuss that after we finish talking about x?”

I’m reading over those questions, and realizing that this is how I talk to doctors all the time anyway, but the difference is phrasing and tone. In every day conversation, I’m casual. The questions are asked with a curious voice. “We’ve talked about switching to x drug a few times, but you don’t seem like that’s a route you really want to take. I know x hospital uses this drug as a standard therapy, can you help me understand why this isn’t something you want to do in this case?”

In THIS case, when you’re at the end of your rope, the questions are less curious and more insistent. Less asking and more insisting.

And at this point, your doctor can get on board, or they can stonewall (in which case, it’s well past time to move on), or they can be polite to your face and send you a letter firing you from their clinic.

But if they’re not offering you any value, you’re better off never seeing them again, anyway, so if you’re 100% comfortable with the possibility that this is the last time you’ll ever see this doctor… go for it.

The Isolation

I know we’re all feeling isolated these days, but I got to thinking recently about the isolation that many special needs parents feel.

It started with a conversation with a person I don’t know very well about travel. This person knew that I hate to fly and that I will not fly over water. I was forced to once against my will and I am not doing it again.

But we were talking about visiting Europe and that it is something I would like to do, but it’s basically off limits because I won’t fly there. She said I could just take a cruise there.

And then we hit the weird part of the conversation. Weird for me, not her.

Because, yeah, we could. But Teddy can’t. So I thought about saying that it’s on the list for when the kids are all grown up. Which it kind of is.

But the truth is that to be gone for that length of time (I think it’s 2 weeks one way on the boat) will be hard forever. Because Teddy’s not likely to be able to move out on his own. He’ll always be with us. So to be gone for 6 weeks, I’d have to find someone who will take him for 6 weeks. And that’s a long time. That 6 weeks includes getting prescription refills. Making and accepting supply orders. Performing 6 subq infusions. 336 times of reminding him to pee unless he’s started being able to wear a watch and actually peeing when it buzzes vs ignoring it. For the love of all things holy I hope it doesn’t still include 6 weeks of butt wiping, but it might. *shrug* Doctor’s appointments. Taking care of the things that come up – and they always come up. 6 weeks of being really really far away.

So then I’m at the place where I don’t know how to respond. I can be truthful. I can explain all of that. (and then likely also have to explain a ton more and answer a whole bunch of “can’t you just” questions.)  Or I can just smile and nod and say “yeah” because frankly this person is never going to follow up in ten years and ask about the cruise to Europe and this conversation isn’t a big deal in the grand scheme of things.

So I just said yeah.

But I feel like when special needs parents talk about feeling isolated, most people picture not being able to go out and be around other people as easily as others. Being left out because friend groups stop thinking about inviting you. And that’s a part of it, sure.

But this is the real isolation. Being alone even with other people. Because you can’t have really honest conversations, and because you don’t have as much in common with others.

Because when your friends are talking about soccer and rock climbing, all you can contribute is what your same-age kid is working on at OT.

Because when people suggest a cruise, explaining that that isn’t an option takes too much energy and requires you to share too much of your personal information so you just lie and say ok.

Because when your family’s talking about their kids’ favorite foods, you have nothing to contribute.

Because when you swing by the hospital library and they learn your kid is going to be in third grade (after you showed him three fingers, but he said 2 because your thumb obviously isn’t a finger, mom), they offer to get you a times table and you say I don’t think we need one, but thanks, and they respond with “oh, isn’t third grade usually when you start working on multiplication?” And then what do you say? Seriously. What do you say? You’re standing there with your kid and there’s another parent nearby and you’re having a pretty loud conversation considering the small space and now what? “yeah, probably, but he’s still working on cementing the concept of the tens place, so I think we’re a ways off from multiplication, can’t you just freaking drop it?” Of course not. No, you’re going to say something like “oh, we’ve already got a nice chart.” (which is also true, but also irrelevant, because you know darn well you’re not going to be pulling out that chart this year.)

THAT is what I mean when I say that being a special needs parent is isolating.

Yeah, it makes it harder to get out. It makes it harder to WANT to get out. But it also makes you feel alone even with other people.

Feeding a Blended Diet

Teddy gets a blended diet through his G-tube, and not formula.

Why not formula? Well, most humans eat food. It’s what our bodies are made to use. It’s “normal.” There’s no reason not to. Formula is full of sugar and oil.

Pediasure Complete Enteral Formula ingredients: Water, Corn Maltodextrin, Milk Protein Concentrate, Sugar, High Oleic Safflower Oil, Soy Oil, Medium chain Triglycerides. (then a bunch of artificial vitamins and minerals)

Water, sugar, milk, sugar, oil, oil, oil.  That’s gross.

So, Teddy gets a blended diet.

Almost any person with a feeding tube could have a blended diet. There are a few exceptions, definitely, but MOSTLY kids (and adults) with feeding tubes CAN have a blended diet. Lots of GIs and Nutritionists are against this idea for reasons I don’t fully understand, but that doesn’t make them RIGHT. Usually, their reasons are things like “you’ll clog the tube,” “it’s too hard,” or “you won’t know if you’re providing all the recommended amounts of every nutrient.”  Because God Forbid any child in the US not get every recommended amount of every nutrient daily. I’m sure all the oral eating kids do, right?

Right?

(OK, if you don’t have any oral eaters, the answer is no. No, they do not.)

Is it hard? Not really. I cook things and I blend them up. It’s a bit more work than if he were eating orally, and yeah – a lot more work than popping the top on a can of pediasure. But it’s not THAT MUCH work.

Does it take a lot of time? When I was blending full time, I spent about 3-4 hours making his food every 3ish weeks. There’s an efficiency benefit in doing more at one time, so if I blended every 4 weeks, it’d still take about the same amount of time. I just only have room on the shelf in the freezer for so many jars.

Here’s what I do.

1. Make recipes. Not everyone uses a recipe. I do. I like spreadsheets. Some people just blend up whatever they’re feeding the rest of the family. I like to utilize the fact that I don’t have to make food that tastes good and create the very best, highest nutrition diet I can. It’s like an intellectual challenge for me. If you’re not into that, you don’t need to be that nerdy.

2. Check food inventory and cook.

I first check over our leftovers. Taco meat from last night? Oh, yeah, that’s getting used. Vegetables from the stir fry Saturday? Yep. Teddy gets MOST of our leftovers. I’ve even started saving leftover eggs from Sunday brunch. Nobody actually EATS leftover scrambled eggs, but they blend up just fine. 🙂  If I’m not blending within a few days, leftovers just go in the freezer until blending day.  I also prefer to cook in advance. It actually doesn’t take that much time. Throw on a few pots to cook grains and one to steam or fry veggies. 30 minutes max. I tend to buy food that’s just for the blends in bulk, cook in a big batch, and freeze in small portions. Then I just have to defrost and blend.

3. Set up my workspace. This is my tiny kitchen. Cooked foods on the counter, produce on the TV tray to my left, jars underneath the tray, other things squished awkwardly in front of the microwave. It’s all right there, though I regularly run things like the hamburger back to the fridge when I’m not using it immediately.

4. Throw the things in the blender. Liquid first, then other ingredients. Blend, adding liquid as needed to make it nice and smooth.

 

5. Pour into jars. I freeze in Mason jars. Leave adequate headspace and don’t tighten the lid to avoid cracking. Others freeze in plastic containers or in Freezer bags.

6. Feed. I do modify the Infinity bags. Takes like 5 seconds.

For a How to Get Started guide, check out Blenderized RN.

Dear Doctors, I’m Good But I’m Not That Good

Dear Doctors,

Today, let’s talk about transparency and expectations, specifically regarding Preparation For A Clinic (or other) Appointment.

I know you have a set of metrics or other information you’d like from me at our appointments. “How is x going” or “how many times does he y a day” or “exactly how much z does he get?” Some of these things are pretty predictable, some of them you seem to invent during the appointment.

And I’m sure you think I track all of this stuff. I mean, I do a great job tracking the things you specifically ask me to track, so why wouldn’t I be conversant with other tiny numerical details of his life? I should know this stuff simply because I live with him and obviously I’m paying attention, right?

But here’s the thing. I can pay attention to anything you want. And I can write it down, I can make charts, I can be so thoughtfully focused on that thing. But I can’t be doing that for all of the things, at all times. Remember, you are not our only provider. You are not the only one wanting us to be observing things, tracking things. And after 8 years of remembering medical details and getting hardly any sleep, my ability to remember details is really waning. (And, let’s be honest, my ability to remember details like numbers has never been strong.)

So while I can tell from his labs that the amount of water he’s getting a day is pretty OK, and I could absolutely bring you an exact number of how much water he’s getting if you asked in advance, I can’t necessarily pull an accurate estimate out of thin air when you unexpectedly ask me for this detail. Sitting here writing this post, I can’t even remember how much water he gets overnight – I’d have to check the pump settings.

Also, I could absolutely tell you something like whether it seems like he’s holding his head up more than he used to… but unless you warn me in advance that you’re going to want to know that, I won’t likely have been paying enough specific attention to that detail to be able to accurately answer with more than a vague feeling.

You’re surprised when you ask me about things like poop and I stumble to answer. I mean, yes, I guess I see his poop every day, but… I mean, come on, guys. I can’t even remember why I walked into a room half the time, you’re really expecting me to remember the details of his poop going back to a month ago? Nope. I can give you vague feelings about his poop, but I can’t give you details unless you asked. A month ago. Then I would have jotted it down every day.

And that’s the key. I know you’re busy but hey – so am I. Our upcoming appointment is NOT a surprise to you. You were likely there when we scheduled it. And at that time, you likely knew what sort of information you would want to discuss. That’s the time to tell me what you’ll want to know when we see you next. “Why don’t we check back in four months? At that time, I’ll want to know details about his poop, like consistency (use the chart), frequency, and whether you notice a difference with the medication.)”

That isn’t HARD. 95% of the time when you schedule a followup, you know EXACTLY what you’re going to want to know at that followup appointment – why not let me in on the secret, and then I can be prepared?

The Walking Dead as a Metaphor for Medical Parenting

I’ve been watching The Walking Dead older seasons lately. It occurred to me how the lives of parents of medical-needs kids are a lot like the lives of people in a zombie apocalypse.

It is constant stress. There is no time for PTSD, just…DTSD (During Trauma Stress Disorder). This was what kept bouncing in my head all through the first season. The constant stress. The always looking over your shoulder. The never fully relaxing.

There is no safety. There is the illusion of safety. Sometimes, you can lull yourself into thinking you’ve achieved safety. But then your farm gets overrun by a herd of the undead.

You need ammo. For zombies, you need actual ammo. For medical needs kids, you need prescriptions, adaptive equipment, etc. – all of which can be just as hard to find as ammo is during an zombie invasion.

You have to fight for supplies. For zombies, you have to be prepared to fight the undead and also other living beings for food and other basic needs. For medical kids, you have to be prepared to fight doctors, insurance, red tape, and ignorant people everywhere for therapies, treatments, diagnoses, and other necessities.

You are safer in a group. As Andrea found back in season 3, and everyone else knew, it’s hard to make it on your own. You need people with you to survive.

Just when you think it’s safe to relax for a minute, a new problem presents itself. The group is all cozy in their prison, they’re winning against their original problem (the zombies). Then BAM! They’re hit by another problem. One they didn’t see coming.

But the people in a zombie apocalypse can see what they are fighting. They’re fighting real, physical beings. Medical needs parents are fighting invisible, sneaky, silent zombies. Our zombies don’t growl and shuffle. They aren’t distracted by fresh meat or flashy lights. Our zombies are silent, invisible shapeshifters who relentlessly pursue our children. It’s as exhausting as a zombie apocalypse.

People with healthy children say the darndest things…

Oh, they don’t mean any harm, but sometimes parents of healthy kids can say the darndest things, can’t they? Here are some of my favorites that I’ve heard, directly said to me or at least in my presence.

“I keep all those nasty chemicals far away from my precious child!” (referring to bleach)

Yes, I remember living in a world where I didn’t have to rely on harsh cleaners to keep my child alive, or to prevent my child from passing on things like C-Diff to my other children.

But instead of the fairly judge-y statement above, I might suggest, “I prefer to avoid chemical cleaners if possible.” (Or, you know, “I’ve been so blessed in my life so far that I am 100% confident that germs in our environment are no threat to the lives of my family” would work, too. Or, “All of our family members have immune systems that we’re confident can fight most germs in our environment, and I’m fortunate enough to not have had cause to ever stop to think about the really dangerous bugs out there.”)

–

“There isn’t any reason to use hand sanitizer.”

I would suggest, “our family hasn’t had much use for hand sanitizer.”

Here’s a list of the times our family uses hand sanitizer. Note that they are all times when handwashing isn’t possible.

• In between steps of multi step medical procedures.
• After outdoor chores when Teddy was nonmobile, before touching him to bring him back into the house.
• Frequently when in public places and touching things.
• Upon leaving the hospital (we wash hands when we walk in the door at home).
• For guests, at the door, so I don’t have to walk them to the bathroom to wash.

Handwashing isn’t always possible. But I’m grateful that some people have never had to worry as much about germy hands as many medical parents do.

–

“Breastmilk is always best.”

Breastmilk is usually best. Some babies have medical conditions such that breastmilk, or breastmilk alone, is NOT what is best. Those moms probably feel terrible, and don’t need your judgy comments.

–

“I would never <whatever>” or “There is never any reason to <whatever>.”

The one I most recently saw was “I would never give my child artificial hormones.” (Note: This person wasn’t talking about BGH in milk, but rather medical use of hormones.) Perhaps, “under normal circumstances, I’d never give my child artificial hormones.” Or, “I am thankful that my child’s body currently makes and utilizes all of the proper hormones in the proper amounts and proportions, and so I have no reason to need to consider using artificial hormones.”

This was said by a person who claimed to be a friend after they learned I was giving Teddy epogen shots (erythropoietin is a hormone created by the kidneys – broken kidneys don’t make any.)

You have to be careful with “there’s never any reason to” statements. Do you really mean “for most kids, there’s never any reason to….” or “in most situations…”? I think you do. And if that’s what you really mean, then say THAT.

 

SICK KID RULES

Since we’re in the middle of cold and flu season here, I thought it prudent to remind parents to keep your sick darlings at home. All day. Every day. Until they’re better.

One would think this would go without saying, but recently while sitting watching my daughter’s gymnastics class, I noticed one of the girls who’s usually inside the gym with her sister was instead sitting next to me with her mom. Coughing. A lot. When her classmates arrived for class, she started to run over to give them a hug and her mom told her no hugging. Why? Because if you’re sick enough to need to stay home from school, then you need to stay away from people. Like her classmates. But evidently not like me. I thanked God that I had begun leaving Teddy at home with Wally for gymnastics last year, because I might possibly be serving jail time for verbal assault right now if he’d been there.

SURPRISE. If you’re too sick to go to school and you’re too sick to attend gymnastics, you’re too sick to be sitting in the waiting room at gymnastics. If you’re also too young to be home alone, then you can stay in the car with your mom, right?

Teddy has primary immune dysfunction. While experts disagree at the moment on the precise nature of said dysfunction(s), the part of his body that fights viruses and cancers doesn’t work right. He’s also got secondary immune suppression – we’re suppressing his immune system on purpose. This means that the part of his body that fights viruses, bacteria, fungus, cancer, and literally everything else doesn’t work right.

This means he gets sick more easily, and he stays sick longer, and it’s harder to get over things.

And every illness brings the risk of rejection. As his immune system vamps up to fight the illness, it’s possible that the vamped-up immune system says “omigosh! Look at this! I found this whole giant kidney that does not actually belong here!! ATTACK!!!”

But even if you don’t have a kid with immune issues, and you have instead a kid who will get a cold and get over it with little issue, you STILL don’t want your kid to get sick. And you don’t want YOU to get sick. Because nobody likes being sick. If you don’t want YOU or YOUR KID to get sick, what do you think the chances are that literally everyone else on the planet ALSO doesn’t want to get sick themselves or to have sick kids? Yeah, pretty high, I bet.

So. I’ve come up with a list of rules for sick kids. Rules that should seem obvious, but evidently aren’t, based on the number of people who don’t follow them. Ready?

1. If your kid is sick, keep them home. Not just from school. From everything. Playgroup. Activities. Target. Everything.
2. When can they go back? When they’ve been fever free for 24 hours, vomit free for 24 hours, rash free for 24 hours, or when they’ve passed out of the contagious period for whatever illness they had. Ask your kid’s doctor for guidance if you’re not sure.
3. Do not assume that nobody cares if your kid shows up with X illness. I once heard someone say that “everyone wants their kid to get chicken pox, so I think we’ll go ahead and go to playgroup anyway.” Ok, please understand that not everyone wants their kid to get chicken pox. And while I can hear some of you gasping over those darn anti vaxxers, know that I’ve heard this ONE TIME for chicken pox, and a billion times for colds. “Eh, it’s just a cold, nobody will care.” Um, people will care.
4. If you’re pretty sure nobody will care, ask people before assuming. For example, before a playgroup or homeschool activity, drop a note in the Event discussion. “Hey, my kid has the plague. We were planning to come unless that’s a problem.” That gives people a heads up, at least. It still assumes that you and your kid are more important than anyone else and their kid, but at least you’re being up front. That gives people like us the opportunity to say, “oh, hey, nope. We’ll stay home.”
5. Do NOT just drug your kid up and send them on their way. Despite Tylenol, cough syrup, and anti diarrheal medicine, the child is still sick. Their body needs to rest and recover. Let them do that. They’re KIDS. Missing one day – or one week – or honestly even one month – of activities and school isn’t going to be the end of the world.
6. Let other parents know. If you were just hanging out with Suzie and Timmy the day before your child started vomiting like crazy, give Suzie’s and Timmy’s parents a heads-up. “Hey, I’m so sorry. Jimmy was fine yesterday, but this morning he started vomiting. I hope we didn’t accidentally expose you to something!” Most people understand you didn’t do this on purpose and will appreciate a warning.
7. Teach your kids good hygiene. Teach them to cough into their elbow. To wash their hands often, especially after the restroom, touching their noses, or dealing with snot in any way. To avoid others as much as possible if going out in public is necessary (such as staying in the car during gymnastics). Have them wear a mask if you must take them into crowded areas or areas with food, such as the grocery store.
8. Teach your kids to be considerate of others. Yes, these things are a hassle, but they help keep others from getting sick.
9. Follow other people’s explicitly stated rules. If your child attends school with a transplant recipient, for example, chances are good that at least the transplant kiddo’s classroom has specific rules for illness. Follow them. If your kid were allergic to peanuts, you’d want everyone to not give your kid peanuts, right? Well, the parent of that kid wants everyone to not give their kid illnesses if it can be helped.
   Another example is if you know medically complex kids or adults. They often have rules and they’re usually pretty upfront with them. We ask that people let us know before coming to our house (or before family or friend gatherings) if they’re sick, if they’ve been sick, or if they’ve been around others who are sick. We ask that people remove their shoes when they enter our home and that they wash their hands. If you know someone who has rules like this – just follow them.

Dear People: Yes, You Can Get A New Doctor

This is our follow-up post to Dear People: Signs You Need a New Doctor.

Dear People,

YES! You CAN get a new doctor.

What’s your first, gut response to hearing that maybe it’s time for a different doctor? Are you protesting in your mind? Even just a little? Probably.

It’s important to listen to that protest and consider it, but if you read through our last blog post and thought “oh wow, my doctor makes stuff up all the time and never listens to me – maybe I DO need a new doctor,” let’s try to overcome some of those protests.

But there aren’t any other doctors

Yes, there are.*

Do you mean “there aren’t any other doctors in my city/area”? You can drive. Be realistic with how often you need to see this doctor in person, take into account any travel allowances offered by insurance/charities/others, and don’t be afraid to seek out doctors further away. We see some specialists that are a 10 hour drive away, and I know lots of families whose children see doctors they have to fly to. Is it easy? No. Is it worth it? Well, if you strongly want to try Treatment Protocol A and your local doctor will only do Treatment Protocol B, then yeah, it’s probably worth it. If your local doctor hasn’t ever treated someone with X before, and you have X, it’s probably worth it. If your local doctor keeps shrugging and nothing they’ve tried or suggested has helped, then it’s probably worth it.

(Yes, I know this can get expensive, and I know it’s unrealistic for some families. But do seek out what resources are available to you to help with this. Insurance, disease-specific charities, charities that help with travel expenses, Ronald McDonald Houses, etc.)

*There are some cases where there really isn’t another doctor. But if you’re already seeing the nation’s or world’s top expert in your issue, chances are good you don’t need to see another doctor.

But I need to stay with our local doctors because we’ll see them in the ER

Yes, you might see the old doctors in the ER. Though, depending on why you’re switching doctors, you might want to avoid the ER they’re associated with if at all possible. Be honest with your child’s new doctor. We switched to you from our old provider because x, y, and z. If we need to go to the emergency room, what should we do?

Most of our (not local hospital) doctors prefer that we give them a heads-up before heading in unless it’s a true life or death situation, and they’ll advise us on next steps, including advice on what to not let the local doctors do. (With his kidney transplant, we have to be careful with meds, and the local guys aren’t always on top of it. I usually get advice like “they might want to do x, that’s not ok. Definitely have them call first” or “just have them call once things have settled down, we’re ok with however they want to treat this.”

We’ve literally never had local doctors other than the pediatrician, but our ER has always just called the relevant specialists at our primary (2 hours away) hospital and done whatever they’re instructed. I guess they don’t have to, but I wouldn’t go to an ER that wouldn’t call my child’s current specialists. (And yes, if I lived in a town with only one emergency room, and that emergency room wouldn’t follow the recommendations of my child’s specialists in another town, I’d move. Easier said than done, I know, but this is my kid’s life we’re talking about.)

It’s too much work

Yes, it is a lot of work. Frankly, this is what kept me in a dissatisfying relationship with my primary care doctor for years. I felt increasingly crappy during those years, my ferritin fell lower and lower, and yet my complaints fell on deaf ears. You’re getting older. You have three kids. You are busy. Blah Blah. I never felt listened to.

I finally sought out a new provider last year, and I wish I hadn’t waited so long. Don’t be me. Don’t wait so long!

It’s Too Awkward!

Yeah. It’s awkward. Most of the time, you can switch doctors and never see the old one again, and that’s that. Some of the time, you’ll still run into your old doctor. Or, in our case, sometimes we have a more gradual switchover, where we see another doctor for a second opinion, but still have his care actually provided by the old doctor. We had this recently, where we felt like our local doctor was just out of her depth with a situation we have going on, so we saw a specialist at a much bigger hospital. That specialist has been a little frustrating, but wanted to do tests and have us see another doctor at their hospital, and so actually getting the second opinion has taken a while. In the meantime, we had another appointment with our local doctor, who we hadn’t really planned to tell we were seeing someone else. But she knew. And that was a really awkward conversation. But we got through it, and ultimately, I needed to just turn off the part of myself that is really socially awkward, and turn up the part that says “my kid deserves the best care possible and I deserve to find out if another doctor can provide that.”

Don’t let the fear of awkwardness hurt you or your kid.

Are any of these (or other) reasons worth risking harm?

That’s really what it comes down to. “Is this a good enough reason to risk harm to my or my kid’s health?”

I’m not advocating abandoning your doctors. I’m advocating abandoning doctors who aren’t meeting your needs, especially if you have chronic or serious health conditions.

You deserve a doctor who listens, who considers your opinions, who educates you, who engages in conversation, who doesn’t lie, who doesn’t bully, and who treats you as a valuable part of the team. If you do not have that, then you deserve a new doctor!