The Isolation

Shows backlit person sitting alone with the words The isolation of being a special needs parent

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.

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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.

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

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

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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.

Title Image. Shows female doctor dressed in blue scrubs and words

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.

Emergency Room Awning, shows words

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!

The outside of a hospital

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!

Pinnable image for this post

Dear People: Signs You Need a New Doctor

Dear People,

We need to talk. We need to talk about your doctors.

We need to talk about getting those doctors off a pedestal, realizing there are other doctors in the sea, and seeking second opinions and better doctors. We need to talk about respect, and facts, and truth, and, yes, jerkfaces.

Let’s call this Part I: Signs You Need A New Doctor.
Our next installment will be Yes, You Can Get A New Doctor.

Signs You Need A New Doctor.

Your Doctor is Condescending, Rude, or Inattentive

This goes without saying, right? I don’t need to elaborate. But yet I know SO MANY PEOPLE who stick with rude, condescending doctors who don’t listen at all. If you walk out of a doctor’s appointment and can honestly say that you would NEVER stand for being treated that way by a store clerk, your spouse, or your child’s teacher, why on earth are you ok with it just because this is a doctor?

Your Doctor Isn’t Capable of Considering Your Opinion or Ideas

Does your doctor brush aside your thoughts or opinions? Ignore your ideas?

“Hey, doctor, I found this interesting research study that suggests that switching to ferric citrate from ferrous sulfate results in much fewer side effects and greatly enhanced absorption. Also, the National Kidney Foundation’s CE class on managing anemia in renal patients had several portions that were highly favorable of this medication switch. What do you think?”  “Hm, I think we’ll just stick with the ferrous sulfate for now. Moving on…”

OK, no.

Yes, as a responsible patient, you should push for further conversation. (See our handy list of questions to help you self-advocate.) If the doctor provides it, that’s great. But you shouldn’t have to push for further conversation every single time. Get a new doctor if this one doesn’t learn that you deserve consideration.

If your doctor doesn’t consider your opinions or ideas even when pushed, though, get a new doctor right now.

Your Doctor Isn’t Capable of Reasonable Conversation

Your doctor recommends something or makes a diagnosis and you’re uncertain. “You know, I was reading up on that diagnosis, but it doesn’t seem to fit. Symptoms include x, y, and z that I don’t have, but don’t include a, b, and c that I do have. Why do you think this is the right diagnosis?”

A doctor worth your time will have that conversation. They’ll answer your questions, they won’t be offended or defensive. They’ll be able to reasonably discuss their thought process.

A doctor who needs to be replaced will get irritated or defensive. Or they’ll pull some variation on “oh, where did you get your medical degree?” Or they’ll disparage the idea of patients self-educating. They won’t be willing to have a reasonable conversation in which they explain themselves and their thought process to you.

If your doctor doesn’t respect you, you need to get a new doctor.

Your Doctor Does Not or Cannot Back Up Their Position With Facts and Research

Let’s pause on this one. Sometimes there just isn’t research. But if that’s the case, a doctor should be able to explain that, and tell you where their recommendations or opinions come from. Often in our own case, Teddy’s doctors can’t pull out a study that says, “kids with this, this, and that have been successfully treated by this other thing,” because there’s literally not one. We have to go by “well, I called a bunch of other doctors and they suggested we try this” or “I don’t know, but logically, this seems like it would be a good option to try.”

But often there IS research. And if a doctor states something as fact, they should be able to back that up. “You said that our options are x and y, but you prefer option x because it’s less risky. How are you quantifying that risk?” “You said that my child needs x, but when I looked at CDC recommendations, they state instead that we should do y. What is the basis for your recommendation?” If they can’t or if they won’t back up their statements, you need a new doctor.

I have most often seen this with women seeking a VBAC (vaginal birth after cesearean). The anti VBAC OB for some reason starts making things up to convince the woman that she can’t have a VBAC, or sometimes they state things like “your chances of x happening are DOUBLE!” which is technically true, but the risk goes from like .03 to .06. Yeah, that’s double, but it’s still REALLY unlikely.

Your doctor threatens to call CPS.

If you have a provider who threatens to call CPS (Child Protective Services) on you and – this is important – you’re not actually putting your child in danger, you need a new doctor. This should go without saying, but first make every effort – including getting a second opinion, and not just from the internet – to make sure that you’re NOT endangering your child. And then get a new doctor.

Let’s back up a bit. You need to be nice. If your doctor suggests a course of treatment with which you disagree, you need to be nice and attempt a conversation. Why do you disagree with that treatment, what alternatives are there that you’d like, why does the doctor recommend this course over the alternatives? It should be a conversation, not an argument, at least on your end, at least to start. If you’re being nice, considering the doctor’s position, attempting a conversation, and are STILL threatened with CPS? You need a new doctor.

(An example that I hear most often with this. Child gets feeding tube. Doctor says child needs formula. Child doesn’t have a medical diagnosis precluding food. Parent says, “thanks but I think we’ll do a blended whole foods diet.” Parent doesn’t back down from this VERY REASONABLE position and doctor can’t back up his position with facts or studies. Doctor falls back on misconceptions like “you’ll introduce bacteria!!” and when that doesn’t work, they use that as a justification to call CPS. They’ve made up a “danger” and then use that as the basis for CPS involvement.)

And the problem here isn’t really that any doctor who would contact CPS with concerns automatically needs to be thrown out. The problem here is with doctors who use CPS as a way to manipulate and bully their patients. You don’t need to be treated so disrespectfully. Make sure you’re in the right, then get yourself a new doctor.

You’ve exceeded your doctor’s expertise

This is another that should go without saying, but yet it does need to be said. Have you just exceeded your current doctor’s expertise? Many doctors in smaller hospitals (even smaller University hospitals – I’m looking at you, UIowa) just haven’t seen a lot of the rarer issues. We’re happy with most of Teddy’s Iowa City doctors, but several of them have only ever seen one kid with one or another of Teddy’s diagnoses – HIM. This is why we’ve sought second opinions or even transferred care for some specialties to larger hospitals. They’ve just simply seen more kids, and seen more kids with his things. It’s not anything against the local guys – but when you work at a smaller hospital, you see fewer rare things – that’s just statistics. If your doctor hasn’t ever seen someone with your issues, go somewhere else if you can, even if you don’t intend to transfer care.

How do you know? Ask. “How many other patients have you treated with this diagnosis? And what is your success rate with those patients?” If it’s less than a handful… really, truly, honestly do yourself a favor and at least seek a second opinion from someone who’s seen a LOT of that diagnosis. Someone who’s conversant with the issues without first hitting up a reference book.

Another way you know? Other patients with similar diagnosis (or parents whose kids have similar diagnoses) will tell you, especially if you ask. Find a group for the diagnosis. Ask. If your doctor or hospital doesn’t have a great reputation for your diagnosis, you’ll find out.


(stay tuned for the next exciting installment in our series – Yes, You Can Get A New Doctor. We’ll be overcoming most of your excuses for sticking with a bad doctor.)

How did you know it was time to replace your doctor? I’ll give some examples from our own lives, and you can leave yours in the comments.


Personal examples:

A GI doctor who needed to replace Teddy’s Gtube button, and said Teddy uses a Mini One (brand) button. I said, nope, he uses a Mic-Key, always has. The man looked me straight in the face and said no, Teddy is using a Mini. I pointed out that the button he had and the button the doctor brought in look nothing alike, and I offered to Google what Mic-key buttons look like for his reference. He INSISTED he was right. He was wrong. I let that one go, but in his clinic notes, he put that Teddy doesn’t even use the G-tube for food any more. This topic literally never came up during our appointment. And it resulted in about 6 months of hard work on my end when the insurance company got ahold of the clinic notes and decided to stop paying for his tube feeding supplies (which he was using for 100% of his caloric intake).  Yeah, we fired them.

A GI doctor who never had answers for ongoing problems, but wanted to see us every 3 months anyway. Every three months so they could shrug and suggest we try decreasing fiber, or increasing fiber. Fired.

A specialist who first refused to contact Teddy’s nephrologist and cardiologist to make sure their recommended course of treatment was safe for his kidney and heart, and then finally relented and said he would contact them. At the next appointment, he said that they’d never called back. This made me concerned, so I contacted them myself. They reported that they’d never heard from this doctor. Fired.

A specialist who consistently didn’t answer my questions, even when I pressed. Fired.

The Dear Doctors series

Evidently, I need to put out a disclaimer similar to the one everyone seems to have to use these days to avoid people’s feelings being hurt by people saying things obviously not directed at them. Clearly, doctors/therapists/care providers (herein called “doctors”) are USUALLY good people doing the best they can. Usually. And just like with any other profession, some doctors do a GREAT job treating patient A but not so great with patient B. And some doctors just aren’t a good fit with some patients. Doesn’t make them bad people.

My Dear Doctors series is not meant to disparage doctors. I’m actually just hoping to bring awareness to those in the medical profession of how things are from the patient side. It’s a perspective they don’t get often enough.

One of our former (because she moved) doctors once told me with some level of surprise that she’d had to take her child to the ER in the recent past and she’d never really realized how stressful that was, she couldn’t imagine being there as often as we were at that point. And she knew going in that her child was not in danger of dying and likely didn’t have anything particularly unusual going on. Like, they didn’t skip the triage room and have the nurse literally RUN them back to a room while paging doctors and respiratory therapists.

The patient side is one they don’t get often enough. That’s the point of this series. “Hey, guys, here’s what this looks like from our side.” Not “hey, guys, you suck.”

Dear Doctors, There’s Only One Of Me

Dear Doctors,

You might not have noticed this, so I’ll point it out to you. I am only one person. There’s only one of me. There’s me, and that’s it. There’s also my husband, but he’s also just one person. We also have other children. You’ve met them. If you look through Teddy’s charts, you’ll even find comments from some provider noting that I couldn’t provide adequate support to Teddy (who had child life attending to his needs) because I was too busy breastfeeding his sister.

It’s because there’s only one me.

So when you recommend we try adding a new (weekly) therapy, or when you tell us that we really should join a homeschool co-op, or when you recommend getting Teddy involved in sports (honestly, it’s like you’ve never even met the kid with this one), or you wonder out loud why we’re not doing intense dyslexia tutoring (3-4 times a week)… I mean, do you also want to be part of deciding what we drop so we can add the new thing? Because welcome to the There’s Only One Of Me reality. There’s only one of me.

When do you imagine all these things take place? Like, do you imagine that if we add an optional activity, the day actually just expands by that amount of time? Because it doesn’t!

In the average week, right now, we have 10-12 hours of appointments, including driving and waiting time. If it’s an infusion week, that’s another 6 hours or so. You seem to be obsessed with his educational progress, so I assume you want him to actually, you know, do school and whatnot, so that takes time, plus he does absolutely no learning after 1:30 pm, so that factors in there. I also have to do those inconsequential things like make food for everyone and take care of our home.

I mean, when, exactly, do you imagine we’ll do the new thing you’re suggesting?

But I know you don’t think about that. I know that, even though you’ll deny it, you sort of see the rest of the family as serving the interests of your patient. And I also know that the primary issue here is that you never ever stop to think about the bigger picture. “This thing I’m recommending is good,” you think. “Therefore, you should do it.”  But you never stop to think, “What other things have I recommended? How does this fit in with the other things?” You never wonder, “Hm, if I have to prioritize this new thing among the other things, which is more important?”

And you literally never stop and ask yourself, “Gosh, what other things does this family have going on?” You’re treating your patient, and that’s where your focus should be, yes. But your patient lives in a family. And that family lives here in the real world. One without unlimited resources of time, money, and energy.

Please, go ahead and recommend stuff. After you do, consider involving your patient’s family in a discussion about how high of a priority the new recommendation is compared to all the other things you’ve recommended they do. Be sure to keep any hint of judgement out of this discussion – parents tend to be pretty sensitive to the judgements coming from or perceived to be coming from their child’s providers – if you want your patient’s parents to be honest with you. Acknowledge that there isn’t time for everything, and help them prioritize. What can be done now, what can wait? What would be ideal but isn’t necessary vs what is truly needed?

This is really where you can be the most help in the life of your patient – by acknowledging that they and their family live here in the real world, acknowledging that they cannot possibly do everything, and helping them prioritize all the things that would be beneficial. This is far better than simply putting out recommendations and letting your patient’s family walk out of your office feeling unnecessary guilt because they don’t live in a fantasy world with unlimited time, money, and energy!

 

Dear Parents and Patients,

Assuming you have run into this same issue, what can you do about it?

Kindly point out to your doctor that you’re only one person. “That new therapy sounds amazing. I’m not sure when we’d be able to fit it in, though. Do you think it’s more important than x thing?” “That sounds great. Do you have thoughts on how we might be able to get help paying for it?”

Or even just “Can you help us prioritize all the things you’ve recommended we do recently? I’m at maximum time/stress/money/whatever right now, and adding something MORE doesn’t seem realistic. Where does this new thing fit in?”

Don’t walk out of your doctor’s office mad that they keep piling things on – they’re supposed to be part of the team. Ask them for help with making their recommendations happen!