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.

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(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.

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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!

Dear Doctors: Let’s All Have The Same Standards

Dear Doctors,

Let’s talk about having some equality of expectations.

See, I am of the belief that your M.D. doesn’t automatically make you more important than me as a human. It doesn’t make your time more valuable. It doesn’t make you more worthy of respect. Your M.D. means that you have knowledge in a specific area of expertise. That’s really it. Well, and you can access all the good medical journals for free with your institution’s log-in.

I also am of the mindset that I have hired you to provide a service that I cannot provide myself. Much like the plumber (who also has knowledge in a specific area of expertise) who I hire when the plumbing jobs in our house get too complex for my self-taught skills. I have hired you to advise me on the care of my child’s medical or mental condition(s). We’ll talk about this more in-depth in a future letter, but for now, let’s just agree that I pay you to provide a service.

Now that we’ve established that, let’s get to the heart of it.

I think it’s only fair that we have more or less equal expectations of one another.

For example, when you ask me to show up 10-20 minutes in advance of our appointment time, then you show up 20-30 minutes AFTER our appointment time, that’s not us being equal. Of course, everyone understands when it’s an emergency, but too often, I’ve heard friends say that they’ve seen the doctor they’ve been waiting for breezing into the office 20 minutes after their appointment time, with their coffee and their coat on, having JUST arrived, and we’ve experienced this a time or two ourselves. Unless you stopped to administer CPR on the side of the highway on your way in, that’s just you saying that you think you’re more important and that your patients aren’t worth showing up for.

And I understand why you want us there early. You want us there, waiting in the waiting room, so that YOUR schedule runs smoothly. And I can go with that. I’m not complaining about that (nor do I adhere to it when you’re always late).

I get particularly annoyed at this when you have policies that include your office staff calling, texting, or emailing – or all three – more than once to “confirm” that I’ll arrive on time for our appointment. And then when I arrive on time for our appointment… you’re not there.

If you expect me to arrive on time, I expect you to arrive on time.

Emergencies happen, of course. To everyone. You may experience emergencies as part of your job or as part of your personal life, just as I may experience emergencies as part of my job or my personal life. As another example, there’s the time I drove over to the hospital after a heavy sleet. People died on the highway that morning. I passed a multiple car pileup. I watched the car in front of me skid off the road, nearly clipping me as he sailed past. I white-knuckled it at 20 mph on the interstate for an hour. (Are you wondering why I did it? It didn’t seem that bad when I left the house and by the time it became apparent that it was really bad, I was already far enough into it that turning around wouldn’t have done me any good – plus traffic on my route home was at a standstill due to the aforementioned pileup.) Even the extra hour I’d given myself to get there wasn’t enough. When I explained this at check-in – we were ten minutes late – I was told I’d have to wait while they called back to see if you’d still agree to see me. You did, but it was a little infuriating to be treated as though I’d just slept in, when I’d nearly killed myself to make it at all.

I’ve been asked to wait for a half hour or more – a few times, remarkably more – because there was an emergency that couldn’t be helped. Each time, I’ve been really understanding. Emergencies do happen. But they don’t just happen to you.

If you expect me to be understanding about emergencies when they come up for you, I expect you to be understanding about emergencies when they come up for me.

Similarly, I believe we should have similar expectations about missing appointments. Obviously, everyone should be courteous enough to notify others as far in advance as possible if an appointment will be missed, and obviously everyone also needs to understand that sometimes advance notice isn’t possible. But many of you have very lopsided absence policies. If you need to reschedule an appointment – for example, because you needed to see the dentist for a routine exam, as one of our providers did – I do understand, to a certain extent. (I mean, hey, I schedule our routine appointments as far in advance as I can so that I know to schedule around them, but not everyone is that…way.) But when you turn around and tell me that my three absences this quarter (for an acute illness, a hospitalization, and an urgent specialist appointment) is too many, right after you’ve rescheduled or cancelled two of our appointments yourself, well, I’m a lot less understanding.

If I am expected not to miss or ask to reschedule appointments, I expect you not to miss or reschedule appointments, either.

(In fact, I would go so far as to suggest that you have even LESS reason to miss or reschedule appointments. You control your own schedule. As patients, our schedules are often completely out of our control. We can’t say to the subspecialist, “well, Tuesday morning doesn’t work for me because we have speech therapy that day.” If Tuesday morning is when the subspecialist has clinic, then that’s when we have to see him.)

I also think it only fair that we operate under similar timelines. I’m happy to take my cues from you – you’re the subject-matter expert here, after all. Recently, I called you with a nonurgent but important question about my child’s care. It took about a week for you to return my call, which was absolutely fine. I was unable to answer your call, so you sent an email with an answer, some more questions, and a few pretty big things for me to think about, which was great. I got the email at the end of the day, at the tail end of a long, big, mind-full-of-things week of big appointments at a different hospital, and I decided it could wait the weekend. I figured you must not be feeling urgent about it, since you’d taken so long to get back to me with my original question. Then you called the next morning, early, to see if I could give you my thoughts on your (nonurgent) questions.

If you need time to consider my (nonurgent) questions, I expect you to give me time to answer your (nonurgent) questions.

Last, shouldn’t we have similar paperwork expectations? I can’t count the number of times I’ve filled out intake forms – which is no small feat these days – with lots of good, detailed information. I look things up. I get out my notes. I do a STELLAR job on those forms. Then you breeze in the room and ask me the questions verbally. Bro, why did I invest the time and mental energy in filling out those forms if you’re not even going to glance at them? (While we’re at it, why don’t you have me mail them in before our appointment so you can be conversant on their contents?) My most memorable experience with this was the time I handed you my papers, complete with addendums, then you asked me things like “what age was he when he said his first word?” When I answered with “whatever it says on the form,” you responded that you wanted to hear it from me. Who exactly did you think filled out the form? And, frankly, you exactly do you think I am? Someone who can remember things like what age my kid was when he said his first word? They make baby books for a reason, and I don’t carry that around with me.

If you ask me to fill out paperwork for you, I expect you to read it. Before we see you, if at all possible.

I don’t think these expectations are at all unreasonable. They are, in fact, equal. They’re asking you to adhere to the same standards to which you ask me to adhere.

After all, we really should to be able to have similar expectations of each other, shouldn’t we?

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I’m trying to end these Dear Doctors posts with helpful or encouraging advice, but I’m not sure what to say on this one. It would be nice to be able to say that you should keep searching for a doctor who addresses at least some of these issues in their practice, but here in the real world, many of us just don’t have that many choices.

If you feel you can, addressing any major issues politely with your provider is a good step. “I don’t know if you realize this, but you’ve indicated that you’re concerned about Johnny’s school performance, but then today, he missed an extra hour of school while we sat in the waiting room. I understand sometimes this is unavoidable, but it’s happened during our last 3 appointments. Do you have any ideas for how we can minimize our waiting room time?”

For the paperwork issue, I have generally just politely directed doctors to the paperwork or to his chart. I’ll answer a few questions, but more than a handful, and I just start telling them it should be in his chart, or I say “I think that question was on that packet I filled out – do you have it?” Or I’ve said things like “I’m pretty sure that’s in his chart – I can look it up using the app if you like,” which usually embarrasses them into looking it up themselves. For the provider I mentioned above who said he wanted to hear it from me, I asked if he could hand me the forms back so I could look at what I wrote, since I’d filled it out when I had all my written records available to me at home, and whatever I put would be more accurate than trying to just go by my memory.

*note: “doctors” here is meant to include all care providers – doctors, nutritionists, therapists, nurses, etc. My examples here are all real, but did not happen all with the same provider. If they’d all happened with the same provider, they’d be my former provider. Many of the providers from these examples are, in fact, former providers anyway.

Update on Teddy

I kept meaning to update after our last Cincinnati trip in August, but I kept waiting for more… things. But there aren’t more things. Just more questions. More unanswered puzzles.

I’m left rather unsettled and disappointed by our whole trip, to be honest.

Teddy had a sleep study. Yes, in Ohio. The local sleep centers, though initially all “oh, sure, we’ll do a sleep study on a 7 year old” changed their tune after the doctors called in the orders for the study, specifying what they wanted. And though I was pissed about it, ultimately I think it’s ok. I’d rather drive out there and get good, useful, accurate information than do it here and risk that something got missed. Also the sleep center at UI is smelly.

Anyway, so he had a sleep study. It was awful. So awful. That child has trauma issues that we need to address regarding people coming at his face with stuff. We kept having to retape the things because he couldn’t stop crying and his tears were making the tape lose its stick. And they don’t get the NASA channel and they don’t want you to use devices after x time, so we couldn’t stream the NASA channel, and without NASA, there’s really no sleeping. Sometimes there’s no sleeping WITH NASA, but it goes much better with NASA.

The results were not bad, not great. The ENT said that basically, there’s no emergency here, but it is concerning, we should do something about it, and we can’t drop the ball on this. He seems to have both obstructive apnea and central apnea. He was going to talk to the neurologist more and then we’ll chat at our next clinic about the central apnea component (essentially – his brain isn’t keeping him breathing at night).

The obstructive component – you know, he hadn’t had a sleep study before his tonsillectomy in 2013, but everyone knew he was having apnea episodes, and his tonsils were GIANT. (The tonsillectomy was because of really high EBV levels, which can cause PTLD, the cancer of nightmares, and PTLD often starts developing in tonsils, and you can search this blog for more info about that.) It was assumed that the tonsillectomy would help the apnea. It did. Some. But not completely.

The lingual tonsillectiomy in November last year was both an attempt to help stop all the croup episodes (or croup-like episodes) as well as help the snoring/apnea. I’d say the results were mixed. The doctor, being a doctor, is very certain that the reduction in the croup like episodes was entirely his doing. Because sometimes it’s hard for doctors to realize the actual size of their heads. But the fact is, he did also start the IVIG around the same time. It could be either or both.

Anyway. He still has obstructive sleep apnea and they want to see what’s going on in there now. We’re going to go back later this month for another set of scopes, see how things are now, and they’re having the surgeon remain handy in case they decide that they think they can do anything with the laryngomalacia. We’ll see how it goes.

Then they’re going to want us to do another sleep study in the spring, and another round of clinic appointments. My understanding is that we’re in for years of sleep studies, which is the opposite of fun. And probably will need a CPAP, especially depending on what the neurologist says. Which, again, is the opposite of fun.

(Teddy has trauma issues related to masks. We are going to need a professional to help us get him to be ok with sleeping with a mask. It’s really, really bad. Just sheer panic. Even when he’s really sick and needs the medicine at the ER and he can barely sit up, that child can fight the terrifying mask.)

We also saw genetics, which was a really interesting discussion, but yielded, again, tons of questions but zero additional answers. Just… maybe additional perspectives.

And then we saw immunology. Immunology was pretty sure that he does NOT have NK Cell Dysfunction because I guess it gets overdiagnosed, despite it being diagnosed really so rarely. So they wanted their own labs. Their own labs showed that his NK cells are few in number and the ones he has don’t work (golly, I’m so surprised), but they think it’s caused by some over-arching issue. But they also discovered high EBV levels, so they want to repeat labs when his EBV is zero.

But they need to repeat the labs at THEIR lab.

They were unable to tell me how they anticipate this working, because I want accurate answers and a better idea of what’s going on with his immune system, but I don’t want it enough to drive 20 hours round trip for labs. To drive 20 hours round trip for labs, on the off chance his EBV level is zero when we arrive.

They had zero ideas on that.

The rest of the appointment was interesting. They had some interesting things to say. Some interesting thoughts to share on immune suppression and innate immune function. They’re either insanely smart, or they’re insane, and that’s really the task now for me. Which one are they? They want us to see the nephrology team in Cincinnati, and we were able to add on an appointment when we’re there later this month. They want us to talk about his immune suppression.

Which leaves me with a quandary. If they recommend another course of action with regard to his immune suppression…. what do we do with that? Do I come back to UI and say, “hey, so…” Because I’m not super comfortable with asking UI to manage a medication regimen that they’re not comfortable with. Do we switch to letting Cincy be his primary nephrology team for a while? Golly, THAT wouldn’t be awkward at all. And I’m not sure I am super comfortable messing with his suppression. His (current/former – she’s on maternity now and then is moving to Ohio, but to Columbus) nephrologist had considered a few different changes in an attempt to finally get rid of the CMV, but ultimately, we kept coming back to the fact that this particular drug regimen has been *REALLY* successful. We’re six years in with NO rejection episodes, and function still amazingly good – hanging in there at stage 2. That’s really, really above average for babies with kidney transplants. Nobody wants to rock that boat.

And us transplant moms talk about how nephrologists are sometimes pretty famously against boat rocking, but in this case… it’s really hard to argue with success. Would other meds be even better? Maybe. But maybe they’d be so much worse.

I don’t know.

We’ll see what they say. And we’ll see what research studies they have to back up whatever they recommend. Hope they’re prepared, lol.

New Diagnoses and Grief

Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of.

Well, ok. Two were things his doctors had already penciled in, but we needed a certain number of lab results for final confirmation and everyone would have been really surprised if the labs didn’t bear out those diagnoses. I’ve already dealt with those things, back when we first penciled them in.

One was a thing that most people who work with Teddy have suggested, enough times over the years that, though I wanted the answer to be “no,” I wasn’t at all surprised that the answer was “yes.”

The last one was a thing I asked about, fully expecting the answer to be “no, it’s just from these old things.” The answer was “yes, and extremely so.”

That’s the one that threw me.

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

We get to grieve over this stuff. Every new diagnosis, even if expected, even if we cognitively recognize that NOTHING about our child has changed just because there’s a new word on the list of diagnoses, requires some mental adjusting. That mental adjusting is grief.

 

The first thing I did was DENIAL. I was sad but kind of ignored it the rest of the day, and the whole next day. I danced around the edges a bit. Asked for resources, joined some groups. But I didn’t type the word into Google. I didn’t check the library for resources. I didn’t follow up on any of the recommendations. I just kind of ignored it.

Next? ANGER. I was mad. Not mad because of the diagnoses. Not mad at him. Mad at unfairness. For the love of all things holy, the child has so much to deal with, why does he have to ALSO deal with MORE THINGS? Can’t this one thing just be easy? Not even easy, can’t it just be the same level of hard we were already expecting?

I think I skipped BARGAINING, unless the “can we seriously NOT?” questioning counts.

But I did not skip DEPRESSION. Not, certainly, the can’t-get-out-of-bed, life-isnt-worth-going-on type of depression, no. But the I-don’t-want-to-do-anything, permanent-wrinkles-in-my-forehead, why-is-it-so-much-effort-to-feed-myself depression. Yep. Had that.

And I’m going to pause here again to say that it’s OK. That was ok. That was NORMAL.

Parents – we need to be kinder to ourselves. The world certainly is not. I can hear it already, dear readers. Some of you saying things like “my goodness, woman, put on your big girl panties, it’s just a new diagnosis. It isn’t even life threatening! What a whiner! What a weakling! Life isn’t about what happens to you, it’s about how you react to what happens, or whatever that meme says. What a wuss!!” This is how (some of) the world responds to this VERY NATURAL process of grief. Even in people who’ve experienced the death of a loved one, but ESPECIALLY in people who are grieving the loss of something less tangible. The world won’t be gentle on you.

You need to be gentle on yourself.

This process is normal! Grief after a new diagnosis is normal. (Not having grief after a new diagnosis is also normal – I certainly haven’t grieved every new thing.)

Give yourself this. Don’t beat yourself up. Don’t necessarily expect lots of empathy from others, but give yourself empathy.

Eventually, of course, we move on to ACCEPTANCE. I’m not there yet with this one, but I’ve certainly gone through this process enough times to know it’ll happen eventually. Want to get there faster? Let yourself experience the other stages if you need to. Let yourself be in denial. Let yourself be angry. Let yourself be depressed. Let yourself make bargains with God, the Universe, or whomever you’d try to bargain with. (I’m halfway through some ancient Roman literature, so I’m imagining talking to Jove or Neptune here.) Let yourself go through the steps that you need to take to get to acceptance.

You’re not going to need to experience this process every time, with every new thing. Sometimes you can skip right to acceptance and move on. But sometimes you can’t. Sometimes your psyche or your body says to you, “nope, not this time.” Pay attention. If your body or your spirit is grieving, you need to let it.

And it’s OK.

CMV

Yeah, it’s been a while since I updated. Mostly, things have been the same. We started the weekly subcutaneous infusions of IG (immune globulins) back in August. He’s been INCREDIBLY healthy. It’s like we flipped a switch. We haven’t been to the ER since September. SEPTEMBER. That’s 8 months. It’s been YEARS since we went more than a month or two.

Everything’s going pretty OK. Except for the CMV.

You can find previous blog posts on CMV. It’s a virus that most people have been exposed to. They have no symptoms, or they have a cold, and then it stays dormant in their system forever. It’s actually an interesting virus if you care to do any reading about it. Anyway. In immune suppressed people, it can cause issues. It’s most likely to be an issue immediately after transplant. It’s fairly rare to get it over a year post. Rarer still to have it several times over a year post.

BUT. CMV is largely defeated in your body by… yes, you guessed it. NK cells. Do you remember NK cells? Those things Teddy doesn’t really have, and the ones he has are really lazy? Yeah. So you might see the issue here. We’re actually still waiting for a final decision on whether he has NK Cell Dysfunction – you have to have three consecutive tests with dysfunctional results to qualify for the diagnosis, and I *think* we’ll be at that when last week’s labs come back. But it would really explain the difficulty with the CMV.

The first time I mentioned CMV here on this blog was January 2014. It’s come up several times. We treat with an anti viral. It goes back down. We teat for another 3 months, then stop treating. Then it comes back at some point. Lately, it’s been coming back more quickly than previous, to the extent that this last time, we’ve only been off treatment for a month and it’s back.

But Infectious Diseases (ID) and Transplant decided to try NOT treating with the antiviral. Making his CMV resistant to the drug that treats it is a real possibility, and would be absolutely devastating. So, we’re – or, they’re – trying to come up with other plans.

Right now, it’s just viremia – just the CMV actively circulating in his blood, multiplying and active. It’s not CMV syndrome or disease, which would mean that he has symptoms of CMV infection. We’re supposed to watch for symptoms. CMV can attack nearly any body system or organ. So symptoms include a fever, general feeling icky, GI issues, mouth sores, enlarged lymph nodes, sore throat, tiredness, low appetite, elevated liver enzymes, rejection, or a billion other things. Basically, everything is a symptom, and actual symptoms would be very serious. Hello, hyper-vigilance. Remember me? We were making great strides in dissolving our friendship, but guess what? BEST BUDS.

IDEALLY, we want his body to learn about CMV – to adapt to it and learn to keep it under control on its own – without learning about that kidney. So, how can we help it do that? Without antivirals?

Well, we’re lowering immune suppression for starters. We are considering changing immune suppression medication. We’re going to switch to IVIG (instead of subcutaneous), to hit his body with a higher/more effective dose of IG.

It’s a little like House MD. We’re kind of just trying some things to see if they work. Maybe they will. Who knows?

I don’t know. CMV is scary. The morbidity/mortality rates with symptomatic CMV aren’t great (again, we’re not there yet). And that’s with regular transplant people without PID (Primary Immune Dysfunction). I’ve searched and searched, but there’s really nothing out there on NKD + CMV + SOT (solid organ transplant). There’s nothing out there on NKD + CMV. So there’s just nothing to go on here. I don’t like it.

We’ll check labs again after Memorial Day. Hopefully will be starting the IVIG before then.

 

Guide to Surviving The Holidays With Your Special Needs (OR ANY) Child

Last year, I talked to so many special needs parents who were experiencing frustrating, disappointing holiday seasons. I’m willing to bet that their children weren’t any happier.

So how can we avoid this?

Let’s discuss.

Rethink your expectations.

Your holiday isn’t going to fit your mental ideals. Yes, you may dream of re-creating the Christmases of your childhood – or of creating the Christmas you wish you had as a child – but, especially if your child isn’t a typical child, that might not be very realistic. Create a holiday celebration for the child you DO have, not for the typical child you WISH you had.

Perhaps having wrapped presents under the tree in the days leading up to Christmas is your ideal, but you have a child with ADHD and major impulsiveness issues. If not “ruining the surprise” is important to you, keep those presents well hidden until the children are asleep on Christmas Eve.

Or perhaps your child with anxiety just really falls apart over the idea of having surprises. My youngest doesn’t prefer to be surprised by presents, especially when he knows far in advance that there will be gifts. For his birthday this last year, I just ended up telling him what some of his presents were – he was surprisingly fine with waiting to see them on his birthday, and knowing what was waiting for him helped him be excited instead of anxious.

How can you change your expectations, or what new traditions can you create, that truly help your special needs child enjoy him or herself?

Rethink Social and Family Obligations

Raise your hand if your special needs child LOVES holiday get-togethers and exhibits perfect behavior? Have your hand up? Skip this section. And yay. Truly.

For the rest of us, whose children get overstimulated, whose children hate crowds and noise, etc. – rethink those holiday obligations. All of them. The school party, the church service, the work parties, the friend gatherings, the family gatherings. How many do you really HAVE to go to? For family things can you consolidate or alternate? (We’ll go to the Smith family for Thanksgiving and the Jones family for Christmas, or We’ll go to the Big Family Thing this year, but next year we’re staying home.)

Or, how can you make those gatherings better? Can you limit the time you spend? Is it better for your child if you go somewhere, so you can leave as needed, or is it better for you to host so that your child can be in familiar surroundings?

And, of course, the perennial “my family knows my child is immune suppressed but showed up obviously sick anyway.” Don’t be afraid to leave. You aren’t obligated to stay at a gathering where the other attendants can’t respect your needs, assuming you’ve made them clear.

Get Family To Rethink Their Expectations

Yeah, this is tricky. Because many families prefer to pretend that they have only typical children in their family, and don’t want to acknowledge whatever difficulties your child or children may have. If you can get family on board, great. Explain your child’s difficulties (not their diagnosis, but their struggles) and how family can help. “Johnny really struggles with physical contact – you can really help with this by giving him space. He may not want to hug you, or sit next to you. It’s not personal, he just isn’t comfortable with touch.”   “Rose gets overstimulated easily with all the lights, noise, and goings-on. We’re going to bring her headphones and she might need to take quiet breaks in another room – if you notice she’s stepped away, just let her have her space. She’ll rejoin us when she’s ready.”

Good communication in advance is usually helpful here.

What if Family Doesn’t Care?

But let’s say your family is like many, and they don’t care. (Or don’t seem to care.) The good news is, you don’t have to get your family on board to still take care of your child. Pack a bag of coping skills – physical and mental. Bring whatever helps your kid. Playdough. Weighted lap pad or blanket. Headphones. Electronic Device. Books. Toys. And when you notice your kid is ready for a break, or starting to lose it, just whisk him or her off to your pre-scouted quiet area for a little one on one time until he or she is ready to rejoin the group. No explanations necessary.

Your kid not going to eat what everyone else is eating? Bring food for them. Your kid not going to eat, period? Whatever. Don’t sweat it. (I have kids who just couldn’t eat when they were hyped up with excitement, quite apart from the tube feeder.)

You don’t need anyone else’s buy-in to take care of your kids.

“But!” you say. “BUT!! The mean looks, the rude comments!”  Whose children are these? Not Aunt Susie’s. Yours. Mean looks, you can ignore. Rude comments, you can ignore or address. You’re going to have to play that one by ear. I don’t engage. I ignore, I purposefully misunderstand, I deflect with humor, I change the subject, or I leave the area. Experience has shown me that engaging isn’t worth the effort. But some people have great luck engaging in polite, educational conversation.

If you think your relative/relatives might actually be interested, chat away!

Inappropriate Presents

This can be tricky. Bear in mind that nobody HAS to buy you or your kid a present. Ever. In advance, if your child has particular needs, you can lay the groundwork for good gift ideas. “Hey, you might have noticed that Sam struggles with gross motor skills. I know you bought a bike for the other kids at this age, but Sam is still probably a few years away from being able to pedal successfully – he would, however, really have a lot of fun with .”    One year, I just let family know that Teddy was developmentally still several years behind peers, and in particular with fine motor skills, so he wouldn’t be able to use things like puzzles that require fine motor skills, and if they had any questions about the appropriateness of a gift, just to ask and I’d be happy to help.

But what if your kids get gifts that just don’t work? They can’t eat much orally, and they were given candy. They can’t hold a pencil and they were given coloring books. In general, the only appropriate response to a gift is “thank you.” Even if, even if, even if.  You may disagree, that’s fine. But in my opinion, being rude doesn’t solve anything. Say thank you and move on.

What if the gift giver asked for ideas and then got something else? Say thank you and move on.

What if the gift giver knows that the recipient literally cannot use whatever the gift is? This appears trickier than I think it really is. Think about the gift giver. Are they clueless, do they have difficulties themselves, or are they just mean? Clueless and difficulties can be forgiven – it really is the thought that counts, even with our special kids. Meanness – well, that’s really up to the individual to decide how to handle, and how you handle it will depend on your long term goals for that relationship.

 

Dear Family and Friends of Medical Parents

Dear Friends and Families of Medical Parents Everywhere,

You might not realize it, but it’s likely that your friends who are parents of medically intense and/or special needs kids are lonely. This life is a lonely one. Most of us feel as though our friends who parent only more or less typical kids just don’t understand our lives. We often face misunderstanding or denial of our children’s diagnoses by family, we receive criticism of the way we parent by basically everybody who’s never parented a kid like ours, and we spend inordinate amounts of energy on calling doctors, therapists, insurance, and pharmacies.

And yet we sometimes act in a way that makes you think we don’t want your company. You might sense that we find some conversations awkward, for example. Or we might consistently decline invitations. Or accept invitations and then cancel. Sometimes at the last minute.

I totally get it that, eventually, you might decide to just stop inviting us.

After all, we almost never show up.

And you know we’re busy. And you know we’re tired.

And it feels like you’re helping. Like you’re doing us a favor. Saving us from having to decline yet another invitation.

But, to us, it feels like we’re being excluded. Yes, we may almost never show up to things that you invite us to, but we still like being included. For one, we like being treated like adults who are capable of deciding for ourselves what we can or can’t make work in our lives. We know you don’t mean it like this, but when you decide for us whether we can or can’t come to something, it feels… discriminatory? infantalizing? insulting? like a thinly veiled way to tell us you just didn’t want us there?

But also, we just plain like knowing we haven’t been forgotten, that our friends or family still want us around. That we still have the option of hanging out with regular people if our crazy lives allow the opportunity. We already feel pretty lonely, but seeing pictures of all of our friends except us going to a movie together just really drives that home. Seeing that your family had a big thing and you didn’t even know about it just plain hurts. In this age of social media, the previous polite understanding of “don’t talk about an event in front of people who weren’t invited” doesn’t seem to apply any more. Inevitably, selfies are taken and shared, and our lives feel just a little bit more lonely, more isolated.

I’m bringing this up today because, yes, we had a situation or two like this in the recent past in our own family, but also because I see this come up time and time again in special needs groups. I’m almost certain that, for the most part, the hurt is very unintentional. But it’s still real.

I have some fellow SN friend parents who I invite to things like my kids’ birthday parties. I invite them and then I say “I know this won’t work with your schedule, but I wanted  you to know we’d love to have you if you can work it out!” or “I know this might be hard to make work, but let me know if there’s something I can do to make it easier.”

You can do this, too, if you feel you need to. Or you can just keep inviting your friends/family who are parents of Medical/Special needs kids to things. Maybe some day, they’ll actually show up, but in the meantime, chances are good that you made their day a little brighter just by including them – just by letting them know you haven’t forgotten them.

Dear Doctors, About Self Care

Dear Doctors,

Do me a favor. Either really believe in caregiver self-care, or just stop talking about it.

And by “really believe in” it, I mean “actually help it happen.”

I feel like it’s important to note at this juncture that you might THINK that you’re helping. You might feel like a friendly reminder “don’t forget to take care of yourself!” is helping. You might feel like “use some of that respite time for a date night!” is helping. But these things aren’t helping. These things are nagging. Or, alternatively, these things are about as useful as saying “hey, why don’t you move to Mars?”

Oftentimes, the end result of these types of comments is the parent/caregiver just feels even crappier, because they KNOW they should be taking better care of themselves, and you’ve just reminded them that YOU KNOW they’re failing at this. And parents don’t like to think their child’s doctors see them as a failure at anything.

So either help, or just shut up.

How can you actually help? Well, for starters, if you know you don’t plan to actually offer practical help, then don’t bring it up. Do you plan to find me a trustworthy babysitter or respite person who is comfortable with Gtube feeds and medications and severe ADHD and developmental delays? And the money to pay for both them as well as the evening out? No? Then why bring it up? When you bring it up, it makes me feel like I have to justify myself to you. “Oh, well, it isn’t really that easy…” and then it turns into a conversation of me trying to convince you that it’s actually not that easy. But the thing is, this is really actually NONE of your business. I actually shouldn’t HAVE TO try to talk you into understanding that the real life, on the ground experiences of your patients are different from your own personal experiences.

Secondly, if you really have a commitment to caregiver self-care, take a minute to assess all the things you’re asking your patients’ caregivers to do. And then think through the things that all the child’s other doctors are asking them to do. And then look at that list. Really look at it. And then consider if, in exchange for a bit of sanity, or some time to eat lunch every day, you could let something go. Nothing you can let go? How can you get community supports in place to help?

Thirdly, listen to the parents of your patients. If they’ve made a well thought out decision to drop something from their radar, LISTEN TO THEM. Why did they decide to let that thing go? Are they overlooking important information that they need to know to make a better decision? Are there compromises to be reached here? Is there something ELSE you could back down on so the parent feels able to bring increased focus to the area they had previously dropped? If the thing the parent has dropped feels vitally important to you, the doctor, then it’s time for a conversation, but the conversation needs to be more than just “this is important, so do it.” You need to look at the child and parents as whole people.

Your patients’ parents are more than just unskilled labor existing solely to support your patient.