Tag Archives: Doctors

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
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In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

Book Review: For the Love of Babies by Sue Hall

A few days ago, I stumbled across For the Love of Babies by chance and immediately wanted to purchase it. I love medical stories, and I am a former neonatal intensive care patient, so this boook seemed perfect. And it’s not been disappointing.

Synopsis

What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.

Review

In this book, Dr. Hall talks about a variety of patients. Most people do know that premature infants will spend time in the neonatal intensive care unit (NICU), but that so will babies with severe birth defects and babies born addicted to drugs, is a lesser-known fact. Although a large number of Hall’s stories are about preemies, there are also stories about babies who need to be in the NICU for other reasons, and stories about preemies who happen to aso have severe birth defects or are born addicted. The babies Hall treats range from a baby born with trisomy 18, a formerly thought to be lethal birth defect, to a baby born with Down Syndrome to a fifteen-year-old mother, and from a relatively “normal” preemie to preemies experiencing the most devastating complications. Some of the babies die, but the majority survive.

Hall includes in her stories not just the medical aspects of caring for NICU patients, but also the social and emotional aspects influencing the families and babies. For example, she ponders a mother’s reasons for using cocaine during pregnancy, leading to her child’s premature birth and ultimately death. Hall describes with caring even the bleakest scenarios. For example, one mother delivers a baby with anencephaly, a birth defect causing the baby to have virtually no brain and die shortly after birth. This mother had previously lost a baby to stillbirth who was just whisked away from her by the obstetrician. In the case of her anencephalic baby, Hall makes sure the baby and family are all as comfortable as possible and have every opportunity to love the baby until her death and even care for her afterwards.

Hall shows us not only the families’ and babies’ struggles, but also her own. For example, it’s clear that she feels disappointment with the substance-abusing mother abandoning her child shortly after he can go home, and sadness for the baby she resuscitated in the delivery room but who died of sudden infant death syndrome several months after going home.

Lastly, it is clear that Hall is very much in favor of giving parents as much control over their babies’ care as possible. I remember hearing about my own situation in which my treating neonatologist told my parents that the staff were keeping me alive and not to interfere. Usually in Hall’s stories, parents want more aggressive treatment than she recommends, sometimes with good outcomes, such as in the case of the little girl who sings to Hall at her unusually late follow-up appointmnet at four years of age.

Hall ends her book with several appendices full of advice for parents of NICU patients. I only skimmed through these, but I’m sure many parents will find the advice extremely useful.

Book Details

Title: For the Love of Babies: One Doctor’s Stories About Life in the Neonatal ICU (SmashWords edition)
Author: Sue Hall
Publisher: WorldMaker Media
Publication Date: July 2011

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Brilliant blog posts on HonestMum.com

Recognizing the Good Mental Health Professional

Between all my medical and especially mental health problems, I can agree with the author of Handpicked Miracle that I’ve met more health providers than I have had friends (or family, as I have never had that many friends). In her most recent post, she lists a number of qualities of the good doctor.

It isn’t always easy to recognize whether your doctor or health provider has these qualities. When you rarely have to see them, it doesn’t really matter, unless they’re truly bad doctors who don’t listen and for that reason may end up making an incorrect diagnosis or initiating the wrong treatment. With doctors or professionals you’ll see more often or over a longer time period, especially mental health professionals, it’s a different story.

I was once told, by a psychiatrist who seemed really good on the surface, that I’d know whether a mental health provider was a good fit at the first meeting. She proved herself wrong when she reacted with snarky comments to any doubts I had about her approach, then ended up terminating our contact before it’d properly started. The reason she couldn’t proceed with my treatment wasn’t her fault, but the way she handled it – by not responding to my E-mails for over a month then bluntly telling me that she couldn’t take on my case after all -, certainly was.

The opposite can also be true, which is why I keep giving mental health professionals second and third and fourth and fifth chances. Then agian, I probably give them too many chances, because generally, if I still can’t get along with a provider after several sessions, we’re unlikely to ever truly click.

The most important qualities in a mental health professional are usually the same as those listed for dcotrs. Here, I’ll give a few examples of good and bad behavior from therapists and other mental health providers in each of these areas.

Collaborative. Of course, mental health patients are not always the most cooperative patients, and their behavior can be tough to handle. The good doctor still allows the patient to have as much control over their lives and the mental health aspects of it as is safe. For example, when the umpteenth benzodiazepine had stopped working as a PRN tranquilizer, my psychiatrist asked me if I’d ever tried any other medication that did work. I had tried promethazine in 2007 and it worked wonders. This is what she ended up prescribing and, though it doesn’t work as well as it did back then, it does have some effect. On the other hand, a former doctor I had ended up prescribing medication without my even having been informed of it and the nurses ended up pushing it on me. This same doctor enforced a seclusion policy on me then ended up saying I’d given consent (which is a legal requirement because I’m an informal patient).

Trustworthy. See above on the psychiatrist who couldn’t take on my case for an example of how mental health professionals shouldn’t act. As a positive example, my current therapist is leaving in a month, and she notified me as soon as possible. She also gave me a say in who would be my new treatment provider.

Intelligent. I generally click best with mental health providers who are knowledgeable, yet don’t act like they’re the absolute authority on mental health or on my mental health in particular. If I know more about my condition than my mental health provider, they’re not a good fit because I’ll be acting like a smartass in their face. For example, the authoritarian doctor who pretended I’d given consent for seclusion, on a different occasion, said that I didn’t have any axis I diagnoses and that all my problems were due to Asperger’s. I told her, in front of her supervisor and a few treatment team people, that Asperger’s is on axis I in DSM-IV.

Humble. While it’s not great if I know more about my conditon than my therapist or psychiatrist, it is good that we can shahre our knowledge.

Personable. It is important that a mental health professionals is interested in the whole patient, because mental health is such an integral part of their being. Sometimes, however, it gets a little on my nerves when doctors ask too many unrelated questions, because I tend to feel it’s a waste of treatment time.

Good listener: a good mental health professional reads between the lines when talking to their patients, yet does get the big picture. I remember when I went for my first psychiatric consultation in late 2006, I wasn’t ablee to say much. When I came back the next time, i’d brought a referral from my GP which basically said what the doctor already knew: that I shut down and wouldn’t talk. The doctor shredded the referral and asked some relatively direct questions. That is how we got talking about the reason I’d almost been kicked out of my place of residence and this is how she got to understanding my social and behavioral issues, which after a few more consultations led to my autism diagnosis. Opposite of this was the doctor who was told by the nurses that I might be depressed (for a reason I still don’t understand). He asked me a couple of standard screening questions yet hardy listened to my elaborate answers. He only said that I had some symptoms but not others. Well, as if I didn’t know that.

Confidence-building: this sums it up pretty much. If a doctor or mental health professional makes you feel like a piece of crap after a visit, that’s not good. It’s understandable that you’ll experience many emotions after discussing certain topics. However, this is not the same as having your confidence shredded. You need to be accepted in order to change. If a provider makes you feel like as a person you’re not acceptable, well, then they’re unlikely to be able to treat your mental health problem.

Vitamin B12 Deficiency: The Invisible But Treatable and Worryingly Common Disease

In the summer of 2012, I suffered from severe, persistent fatigue and episodes of lightheadedness. I went to my doctor, thinking I had iron deficiency anemia once again. My hemoglobin was always normal, but the ironn itself, which is necessary in the production of hemoglobin, had often been low. This time around, however, the cause of my fatigue was vitamin B12 deficiency.

Vitamin B12 deficiency is relatively common but used to be underestimated. It affects between three and six percent of the population, becoming more common as people age (Allen, 2009).

Vitamin B12 deficiency is usually diagnosed through a blood test. A deficiency is defined as a serum level of B12 below 148 pMol/L or 200 pg/mL (Allen, 2009). My level at the time was 120 pMol/L, which my doctor said was “not very low”. This may be so – I have met people on the B12 deficiency foundation forum with levels of 25 or less -, but it’s still cause for concern. Besides, my methylmalonic acid (MMA) was also elevated, which Allen says is the “gold standard” for diagnosing B12 deficiency.

Symptoms of B12 deficiency can be diverse. I only had tiredness and lightheadedness, but you may also experience rapid heartbeat or breathing, pale skin, sore tongue, weakness, an upset stomach, diarrhea or constipation. If B12 deficiency is not treated, it could lead to nerve damage. In fact, Chris Kresser, a natural health specialist, thinks that some symptoms common in the elderly, such as cognitive decline and lessened mobility, may in fact be due to untreated B12 defieciency. Kresser also cites a much higher prevalence than Allen, but this seems to be due to bias.

It is the Dutch B12 deficiency foundation’s position that, unless you’re eating strictly vegan, the cause of B12 deficiency is most likely malabsorption and you need to insist on injections. Malabsorption can, according to WebMD, be due to various causes, such as atrophic gastritis (where the lining of your stomach becomes very thin), pernicious anemia, Crohn’s or Celiac Disease, etc. However, eating a vegetarian diet with few eggs or dairy, as I did, can also cause low B12 levels. I went with injections anyway because I hated the taste of the tablets.

It is also the B12 deficiency foundation’s position that measuring serum levels after you’ve been using injections, won’t be useful. In my case, I was given blood tests after the round of injections anyway, and these showed my B12 level was elevated in fact. It dropped to normal within a few months and stayed within the normal range until at least my last blood test in December of 2013. I eat meat again, so it could be that my low consumption of animal products, even though I wasn’t strictly vegan, was causing me to have a B12 deficiency.

Reference

Allen LH (2009), How Common Is Vitamin B12 Deficiency? American Journal of Clinical Nutrition, 89(2):693S-696S. DOI: 10.3945/​ajcn.2008.26947A.