Should New ICD-10 Code Reference Puerperal Psychosis?

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Doctors At The General AssemblyA recent blog post at Supercoder exclaims there will be a new code for Postpartum Depression in the ICD-10. What’s the ICD? The ICD ” is the standard diagnostic tool for epidemiology, health management and clinical purposes, according to WHO. This includes the analysis of the general health situation of population groups.” In simple terms, the ICD is where codes for diagnoses and treatment are found and then used by doctors for your charts and for insurance purposes. Of course, it is also used for research and tracking purposes as well (epidemiology).

One would think this is good news as it changes the convolutions from the ICD-9 and simplifies it into one code. But in my personal opinion, this is not a good step for anyone. Why not?

Because, according to the blog post at Supercoder, this new code will reflect a diagnosis of Postpartum Depression as Puerperal Psychosis. What’s the ONE thing we always, always, always cry from the rooftops?

Yup.

POSTPARTUM DEPRESSION IS NOT PSYCHOSIS.

And yet, in the new version of the diagnostic bible for medical professionals, postpartum depression will indeed, become psychosis.

Why the change?

According to Medicaid’s page regarding the switch from ICD-9 to ICD-10, “The ICD-10 code set is much better at describing the current practice of medicine, and has the flexibility to adapt as medicine changes.”

In my humble, non-professional, survivor opinion, this is not a move forward. Instead, this is a step back. We have fought so very hard to differentiate postpartum depression from psychosis. For women, it is an important distinction to make when seeking help. With media sensationalism, the cases the public hears about are rooted in psychosis but often referred to as postpartum depression. This is makes the need to differentiate between psychosis and depression urgent. Women and their loved ones need to be reassured that not all cases of Perinatal Mood Disorders are psychosis. In fact, Psychosis is extremely rare and doesn’t always end in death despite carrying the highest risk for both infanticide and suicide.

In reading the code information page at the ICD-10 website, postpartum depression is mentioned and explained in detail. It’s done quite well, actually. However, the fact remains that the leading words are “puerperal psychosis.”

According to Wikipedia, the definition of “Puerperal Psychosis” is “a term that covers a group of mental illnesses with the sudden onset of psychotic symptoms following childbirth. A typical example is for a woman to become irritable, have extreme mood swings and hallucinations, and possibly need psychiatric hospitalization.” While this does indeed describe Perinatal Mood & Anxiety Disorders, emphasis must be placed upon the fact that psychotic symptoms are not part of all of those diagnoses found under the Perinatal Mood & Anxiety Disorder umbrella. Only one – Psychosis, involves psychotic symptoms.

I did not struggle with Psychosis but rather with Obsessive Compulsive Disorder. I experienced a near-psychotic break as a result of a negative reaction to medication but it resolved once my medication changed. (This is why it is so important to communicate with your physician about any changes in behavior while on any psychiatric medicine).

While I appreciate the effort to simplify the coding for Perinatal Mood & Anxiety Disorders, the road this starts us down does not seem to clarify much of anything for women, for doctors, or for the media. The results of this change may prove to be a further hindrance to treatment and increase sensationalism with rare cases ending in infanticide and suicide. Imagine a young mother in a room with an untrained physician being informed that she’s just scored positive on the Edinburgh Postnatal Depression Scale and with this diagnosis of Puerperal Psychosis, she’ll need medication, etc. One would hope physicians would be better but there’s always the what if…the what if that I hear all too much from mothers who have experienced the untrained doctors. Perhaps this is what frightens me most.

I would love to hear the opinion of others regarding this change to the coding for Perinatal Mood & Anxiety Disorders. Do you think it’s a step in the right direction? Or do you see it as a hindrance to treatment and outreach? Codes are so rarely discussed publicly so perhaps it won’t matter in the grand scheme and I’m over-reacting. But in a world where labels matter (and they do, in the Perinatal Mood & Anxiety Disorder world), this, in my personal opinion, only ends in a huge leap backward.

Chime in below with thoughts and questions.

(photo credit: “Doctors At General Assembly”, Waldo Jaquith @flickr)

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Triggers and How They Affect Recovery

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Triggers and Recovery from mental illness

Knowing is half the battle. I found this to ring true in my experience with managing my mental illness during my pregnancies and postpartum.

I was diagnosed with Bipolar Type 1 in 2006. It took over a year for me to find the right psychiatrist, the right combination of medications, and the right techniques through therapy to allow me to begin to manage an illness which had taken me and my family completely by surprise. After months of anguish over what was working and what wasn’t, we finally found a medication that stabilized me and I started to feel pieces of my old self emerging from the darkness.

Once I had been stable for about a year, my husband and I decided we were ready to start a family. I was scared of a recurrence of my illness, but wanted to be a mom more than anything, so we started trying and I was able to get pregnant rather quickly. Unfortunately, our joy was fleeting as I experienced an early miscarriage and had to have a D&C. I was afraid that the medication I had been taking for my bipolar disorder caused the miscarriage, so I convinced my psychiatrist to allow me to taper off the med so that we could try again after I healed from the surgery.

We became pregnant again fairly soon after, and since I was doing so well off the medication and had no recurrance of symptoms, my doctor continued to see me as a patient but allowed me to stay off my medication for the duration of the pregnancy.

This was a terrible decision on both our parts, but I didn’t realize this at the time. Four weeks after delivering my son I experienced a severe episode of postpartum psychosis and had to be hospitalized for a week. It was arguably the worst week of my life, having been ripped from my child, having to abruptly stop nursing, and it took an incredible toll on me both physically and emotionally.

I was stabilized quickly by the team of doctors at the hospital by resuming my course of medication I had been on before my pregnancy. The recovery from the trauma of being taken away from my newborn for a week would take much longer.

I learned through my postpartum psychosis episode that my triggers are: lack of sleep and lack of medication in my bloodstream. These two facts would prove essential to me creating a much more positive postpartum experience with my second child. But not without another lesson first.

Once stable again after my PPP hospitalization, my husband and I began to talk about completing our family with one more baby. Even with my three hospitalizations (two before our first child and the PPP episode), I still didn’t know enough about my illness to know that the benefits of me staying on my medication during the pregnancy and exposing the fetus to the medication, although not the most ideal situation, far outweighed the risks of not being on medication at all given this was one of my top two triggers.

Doctors can advise patients, but it’s up to the patient to follow through with the prescribed recommendations. My doctor had agreed to let me stay off medication during the first trimester due to a heart defect risk, but after week 12 we decided I would go back on my medication for the duration of the pregnancy.

Tapering off my medication in just week 5 of the pregnancy, combined with my excitement and mounting loss of sleep over how excited I was to see those two pink lines on the pregnancy test, landed me in the psych ward again. My baby was barely the size of an orange seed and I had to be hospitalized for almost a week and put on antipsychotic medication to bring me down from the mania I had been struck with.

Because of lack of sleep and lack of medication. Two things I learned I could control.

Recovery from that episode took months; experts say that each subsequent episode is more difficult and takes longer to recover from, and I’ve found this to be true. But I emerged from that setback a much more informed and capable mother, ready to truly manage my illness so that it did not cause me and my family any further pain.

My husband and I talked about how we could handle my postpartum period differently with our second child, and we made plans to take charge over my triggers so that I could stay in recovery long-term. I stayed on my medication for the entire rest of the pregnancy and beyond because my medication kept me stable. We made plans that I would bottle-feed and my husband would take over the middle-of-the-night feedings between 2am – 5am so that I could get a long stretch of sleep at night, keeping my nocturnal clock in check.

I’m not saying it was easy. But my postpartum period with my second child was so much more enjoyable and relaxed compared to my first because I took the upper hand over my triggers. With my family’s support, I made it through. And I continue to keep a firm grip on my dedication to the medication that keeps me stable and getting the appropriate amount of quality sleep each night so that I can stay steady on my recovery path.

Bipolar disorder is a condition I’ll live with for the rest of my life. Learning my triggers and techniques which allow me to stay on top of them so they don’t throw me into a manic episode has been a learning process, but it is one which has empowered me to live well even with a mental health disorder.

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It’s Harmful to Pretend to be Supermom

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I remember all the feelings from when I had my first baby almost six years ago. Joy, utter disbelief at how we created something so freaking amazing, relief, exuberance, nervousness, exhaustion. But none was more harmful than the feeling of being invincible.

This feeling of invincibility is actually a symptom of postpartum psychosis, but I didn’t know it at the time.

I was now in charge of a new, helpless little baby. It was as if my ego grew tenfold in the moments he was extracted from my belly and the only person who could do things right for this tiny person my husband and I had brought into this world was me. Because I was his mama, of course.

He liked how I swaddled him best, how I rocked him just right, how I fed and burped him. I was trying to breastfeed exclusively which, looking back now was a mistake given how lack of quality sleep is a trigger for mania in my case, but I was putting the baby first, not my mental health. I never gave myself a break because I thought if I did, I’d be failing as a mom.

What I know now, after experiencing postpartum psychosis when my son was four weeks old, after recovering and going on to have a second baby, is that pretending to be supermom is harmful. It’s probably one of our worst habits as moms – pretending everything is fine when it’s not. This type of facade hurts everyone in the family, especially the mom. [Read more…]

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Toward A Better Understanding of Postpartum Depression

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emergency-stop-buttonThe following post is about a potentially triggering topic.

Please be aware of this as you continue and if you are in a particularly fragile or sensitive state, you may want to skip this post altogether.

This post will continue below the graphic to the left.

If you’re choosing to skip this post, here’s a really adorable video of a tiny hamster eating a burrito to watch instead.

Because well, a tiny hamster. Eating a burrito. What’s not to love???

(I’m kind of in awe of how fast the little guy chows down!)

 

 

 

Last night, on Facebook, I noticed a post by The Postpartum Stress Center:

 

Postpartum Stress Center FB Snapshot

 

 

 

 

 

As an advocate, one of the biggest things I fight is stigma and misinformation. Sure, I reach out and help women seek help as they battle against whatever form of Perinatal Mood & Anxiety Disorder they may have looming large over their lives, but the majority of time, I am correcting issues like the one Karen Kleiman (founder of Postpartum Stress Center) refers to above. The post refers to an article appearing at the Miami Herald’s website about a mother who attempted to drown her child. She also tried to poison and smother him when he was just two months old.

Nothing is more infuriating than reading an article about a mother who has harmed her child only to discover the only term used within said article is postpartum depression.

I cannot emphasize the following enough: Women with postpartum depression are highly unlikely to harm (and therefore kill) their infants. Women who struggle with postpartum psychosis, however, are far more likely. That said, at this point, the only person stating she suffered from postpartum depression is the mother. Her family admits she sought treatment shortly after her child was born but we do not have details. Yet one mention of postpartum depression and boom. We’re off to the races without putting the right saddle on the horse.

I reached out to Karen Kleiman for her thoughts about this situation. This is what she had to offer about Armour “blaming” PPD:

“Of course Armour blamed it on PPD. That’s all we talk about. PPD is so frequently used when referring to any postpartum mood or anxiety disorder. in fact, it is used when there is NO mood or anxiety disorder, such as the Baby Blues. So, yes, until we have a clear diagnosis (and even then, the diagnosis can be wrong) we need to be careful. That’s the media as well as the public at large. She is being judged by all of us.”

She is most definitely being judged by all of us, whether we want to admit it or not. All we can offer at the moment is conjecture, which is a dangerous thing if accompanied by misinformation as well.

Here’s a quick lesson:

Postpartum Depression, a commonly used umbrella term for the mood disorders on the Postpartum Mood Disorder spectrum, is also the term for one of the disorders on the spectrum. Postpartum Depression may consist of but is not limited to: sadness, crying for no reason, lethargy, lack of interest in previous activities/hobbies, distance from baby and family or social activities, anger, irritability.

Postpartum Psychosis, the most serious of the Postpartum Mood Disorders, often involves (but again, is not limited to): auditory or visual hallucinations, the inability to care for oneself and make decisions. Considered a medical emergency requiring immediate hospitalization, this particular disorder also carries the deadliest rate of both infanticide and suicide.

As you see, the two are quite different beasts. They are on the same “spectrum” as they are both mental disorders which occur after the birth of a child, but the signs and symptoms for both are of completely different degrees.

Karen continues, with this:

Let’s face it, even the experts disagree. The lines are blurry and they are getting blurrier instead of clearer. More and more cases are unfolding that are confounding experts and have us wondering what variables are related to what, if you know what I mean. So education is indeed the key. But education isn’t enough. Because mental illness isn’t crystal clear and many definitions merge into each other. So we also need compassion and patience. We need to stop jumping to conclusions, stop judging, stop presuming we understand what happened, and we need good assessments, good treatment, good journalism and continued advocacy. But in reality, we live in a culture that wants information NOW and they want it whether it is accurate or not. Sensationalism sells and we scaring the hell out of women who are just trying to understand and trying to heal.

How can we fight back? By continuing to do what we do. Get the right information out there. Spread it around as best we can. Journalists are fighting against deadlines and unfortunately, this doesn’t always leave them time to check their facts.”

What can families and friends do to better educate themselves in order to help loved ones who may end up fighting the nastier beasts on the Perinatal spectrum? They can do the following, according to Karen:

Again, women and their families need to be alert to changes in personality or behavior after a baby is born. If something doesn’t seem right, it probably isn’t. It is far better to overprotect her and be mistaken, than to miss the opportunity to get her the help she needs. Here is a link to our Emergency Room Guidelines, which will give you info about screening for psychosis.”

The number one thing to keep in mind, particularly if you think it can’t happen to you or someone you know, is that it can.

Postpartum depression and psychosis can happen to any one. It happens to loving mothers who have anticipated the birth of their baby with joy and excitement in their hearts. It is cruel, brutal illness that does not discriminate. It is no reflection on the mother, who is suffering. Surely, we can have compassion for mothers who are suffering.” -Karen Kleiman

The article at the Miami Herald pointed out that Armour had created a video, portraying her love story with her partner, and her joy about her upcoming birth. What went wrong? How could a happy mother possibly go from overjoyed to attempting to kill her own child? Therein lies the more important question and story, in my opinion. It’s a difficult story to write, to comprehend. But the more we write about it, with the proper terms and information included, the more we encourage mothers to step forward, courage in their hearts, to seek help before it is far too late.

I reached out to Dr. Kenneth Johnson, the chair and professor of obstetrics and gynecology in the Nova Southeastern University College of Osteopathic Medicine, who was quoted in the Miami Herald article, offering him a chance to clarify the statement used in the piece. This is his response:

“I of course agree with you that even with severe postpartum depression it is very rare for mothers to harm their baby.  Postpartum psychosis is more severe and more likely to be associated with risk to the mothers baby.  Separating the two conditions is very difficult clinically as there is almost always overlap with severe depression when psychosis is evident.”

He is right, and Karen Kleiman makes the same point in her article at Psychology Today. The difficult issue with Psychosis is that until there is a break, it’s very difficult to discern if the person is struggling with severe depression or with psychosis. Psychosis is always a medical emergency and requires immediate attention.

Another thing to keep in mind, particularly given that July is Minority Mental Health month, is the lack of education regarding mental health issues among minority populations. A’Drianne Nieves, who blogs at Butterfly Confessions, is passionate about speaking up about mental health issues and the lack of resources, voices, and education which exists today. She had this to offer about Armour’s situation:

Education, man. Distinction between illnesses & awareness about the range of their symptoms. Doctors need to really start educating women on this. She didn’t have PPD. Whatever treatment she received I’m sure it wasn’t adequate or last long enough or maybe they just misdiagnosed her. Her family-did they know the symptoms of psychosis? What to do? Who to call? Education. Education, especially in minority communities is lacking and is a critical need.

A’Drianne also offered this on her FB page when sharing the Miami Herald article:

This is why we need more awareness on postpartum mood disorders and their symptoms among women of color. FACTS. We need FACTS on the wide range of symptoms and distinction between each illness. Facts and support/access to resources…..This is why #MinorityMentalHealth Month matters. This is why we need to keep advocating and have more people of color SEEN in the mental health advocacy space, especially online and in mental health magazines and other publications/literature.”

The media is not only getting their facts wrong, they are increasing stigma. As Karen so brilliantly states in her piece at Psychology Today, ” Journalists, Doctors, Everyone: Let’s Get it Right”:

“Let’s get it right. Lives depend on it.”

They do depend on it. The wrong description or sensationalized information causes women and their families to fear help instead of embracing it with open arms. I have lost count of how many times a mom told me she can’t take medicine because her partner is afraid it will turn her into Andrea Yates. Or how many of us must avoid the Internet when sensationalized stories are bandied about with horrible comments attached – comments which range from the pitied to the enraged to the downright vicious. Comments which categorize all of us with a Perinatal Mood Disorder as monsters. We are not monsters, you know. We are you. We are your mothers, we are your sisters, we are your daughters, your cousins, your wives, your aunts…we are the cashier at the store, the accountant down the hall, the lawyer defending you in court, the doctor you take your children to when they’re sick, the employee at your favourite restaurant, the postal employee who delivers your mail, we are every woman and we are just like you with hopes, dreams, and lots of love to give. But we live in fear as we struggle because the media paints what we fight with such dark intense strokes.

Journalists are inching closer to getting it right but there’s still a long way to go. A long, long way.

If you see a story which includes misinformation, reach out. Contact the journalist. The paper. Write a letter to the editor. Speak up.

We owe the women on this road behind us a smoother ride than we have had on our own and in order to do that, we cannot afford to remain silent.

If you are a journalist writing about Perinatal Mood & Anxiety Disorders, reach out to Postpartum Support International for the facts. Or if you’re pressed for time, you can find them online at their Get The Facts Page. If you’re a mom or have a loved one struggling with a Perinatal Mood & Anxiety Disorder, there’s plenty of help out there. You can reach out to Postpartum Progress, to Postpartum Support International, or use the hashtag #PPDChat on Twitter. You are not alone and there is help. Don’t let stigma fool you into believing you’re a monster. You’re not. You are loved, you are not to blame, and there is absolutely a light at the end of your tunnel.

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