Warning – this post may upset you (I know it did me).
Here we are, in the middle of a campaign to get the way in which Pernicious Anaemia is treated reviewed. We are getting somewhere, though progress is slow. Thankfully we now have two research teams looking at the treatment which, as we know, should be based on the patient’s needs and not the one-size fits all strategy that is now used – especially in the UK. Hopefully soon they will have some scientific evidence to back up the sea of anecdotal stories that we have regarding inadequate treatment.
The problem we are faced with is that for so many years patients with PA had no recognised patient body that could speak up on behalf of patients. That changed with the formation of the PA Society. Getting the way in which we are treated changed involves four distinct phases – AIDA which stands for Awareness, Interest, Desire and Action (it’s the basis of all buying behaviour). So far we have concentrated on the Awareness Raising. We have used case studies and surveys to provide evidence that there is a problem, a serious problem in this area. Thankfully, we are now engaging with medical professionals and other scientists who are Interested in looking into this issue.
One case study relating to individual treatment plans was sent to me a few days ago and it involves a brother and sister. I’m going to pass this on to you because it illustrates perfectly how the one-size-fits-all treatment doled out by various health boards affects not only the individual patient but the family as well. I’ve changed names for anonymity to be preserved.
Jane has been ill all of her life and has a long medical history. She has been seen by the following specialists:
Developmental paediatrician, Gastroenterologist, Allergist and Immunologist, ENT, Respiratory and Sleep specialist and a neurologist. Jane has a varying array of symptoms and has been given the following diagnoses over her lifetime:
Complicated Gastroesophageal Reflux Disease, Gastroparesis, Dairy and Soy Protein Intolerances, Food Induced Enterocolitis Syndrome, Sandifer’s Syndrome, Sleep Apnoea, Periodic Limb Movement Disorder, Sleep Myoclonus Parasomnia, Insomnia, Restless Legs Syndrome, Peripheral Neuropathy, Iron Deficiency, Neutropenia: I could go on but I’ll leave it at that. These issues have been treated with various procedures, surgeries and medications. But despite the number of specialists involved, there was no investigation into finding an underlying link to all of her conditions.
As the periodic limb movement disorder was so severe and not responding to other treatments, Jane was prescribed Clonazepam (a benzodiazepine, one of the most common names is Valium). This did not help to alleviate her symptoms at all. After a few months Jane was seen to have almost no B12 in her blood and she was described as having Pernicious Anaemia due to IF antibodies. After the initial loading doses, Jane has stayed on a weekly B12 injections and has responded well to this. Her movement and sleep disorder symptoms have significantly improved, as the underlying cause (B12 deficiency secondary to Pernicious Anaemia) was being treated. As a result, she began weaning from the unnecessary Clonazepam.
Unfortunately, Jane suffered badly from the withdrawal symptoms when the benzodiazepine was slowly reduced, and her physician advised to not reduce the medication again until the withdrawal symptoms alleviated. Unfortunately, so severe was Jane’s withdrawal symptoms, that lasted over two months, that this has now been increased to a twenty week weaning period where the drops of the drug she receives will be increasingly diluted until she receives only water.
Jane has a brother called Jim. Jim has also been diagnosed as having Pernicious Anaemia. While Jim also has gastrointestinal and balance/coordination issues due to Pernicious Anaemia, his most severely presenting symptoms involves his mental health. Jim is still suffering from the symptoms of Pernicious Anaemia even though his B12 deficiency has been corrected. Jim did improve dramatically when he first had his B12 injections and even though he has developed a bank of coping strategies he still suffers from the symptoms of PA. His doctor prescribed a course of loading doses and then he was put onto a three monthly regime. However, after six weeks his anxiety kicked back in significantly so his doctor prescribed another jab. Immediately his anxiety, low mood, and perfectionism to the point of obsession improved considerably. However, after just three weeks his emotional dysregulation became apparent again, he had low self-worth and was increasingly angry. He got so low that he began telling people he wanted to kill himself, the he didn’t want to be here and it was all too hard. He began punching his head saying that his brain is stupid because he couldn’t remember anything. Jim’s doctor prescribed an injection every two weeks.
Jane is two and a half years old; her brother is five.
Here’s what their mother told me.
“The day after Jim had his injection he woke up a different child. I wouldn’t have believed the dramatic difference if I hadn’t seen it with my own eyes. He bounded out of his room with a smile on his face, exclaiming “I can’t believe how one needle can make me feel so much better”. He said his favourite day is Wednesday as he gets his needle, and was disappointed when I told him his was every two weeks not weekly like Jane’s because it makes him feel so good. I love that he can see the worth in it as it’s not a struggle at all to get him (or Jane) to get their injections”.
Jane and Jim’s mother is a health professional. Here’s what she added:
“It’s absolutely insane to see the difference a vitamin makes first-hand to not only so many bodily functions but also mental health. Myself and the two kids all present so differently with the same condition. It just made me reflect on my own work practices and keeping in mind that this kind of thing (B12 deficiency in particular or other deficiencies in general like vitamin D, iron, magnesium which can also impact on mental health) could be going on for many of my clients, and how the manifestations may present differently depending whether a child or adult. And to be particularly mindful if a client has other Comorbid medical issues too, that will be a red flag for me that a full medical work up is warranted”.
So, think on this. Imagine if the mother and her two children were faced with a doctor who would refuse to give them more frequent injections than the usually prescribed 1mg every three months. Think of how that would impact on the patient and the family. Thankfully through the persistence of the mother who used a combination of observations, tact and diplomacy the neurologist treating the family has prescribed treatment based on the individual patients’ needs.