When I came to collect Elizabeth I did not recognise her as she had changed her appearance completely by changing her hair colour. I cannot truthfully say I like it but it is Elizabeth’s choice. We had a nice day out at Woburn Abbey but were limited to what we could do. Elizabeth likes animals and I could not think of a better place to take her but of course she has trouble walking now and feels dizzy and needs to hold on to my arm all the time. She also gets panicky when sitting down whether it be in a public area or open spaces now. There was never any problem like this before she was hospitalised /imprisoned for 3 years. I not only blame the length of time spent like a prisoner on a Section 3 but also this drug is no good for someone who is “treatment resistant” as all I can see is Elizabeth going downhill whilst I am desperately trying to think of a solution and get her the help she needs. There is no help under the hospitals ie psychiatrists or GPs when it comes to the specialised help that Elizabeth needs now. I have had to look much higher than this to find solutions.
Anyway I drove back from Woburn Abbey and we had a nice peaceful time at home. I had ordered all the shopping on line for a change and the next day I cooked dinner in between cleaning and doing chores whilst Elizabeth was occupied with her sister’s company. I took Elizabeth out to a local park attraction but like at Woburn Elizabeth could neither sit in the café for long or walk around. We did not stay long. Elizabeth has been very happy to see her cat and at one point she had to sleep for a while as she did not feel too well. Other drugs have been supplied alongside the Clozapine – these other drugs are Lorazepam and Paracetamol. I am going to find out about more about this. I am not sure it is a good thing at all that Elizabeth should have more drugs on top of this highly sedatory chemical Clozapine and I shall find out for sure. Also I have been reading up on NICE Guidelines and of course I have applied for their panel and am waiting to hear from them. I see no mention of Clozapine as the treatment for the new diagnosis of PTSD. Clozapine is certainly not indicated in PTSD in either the NICE guidelines )which incidentally are more about cost than efficacy) or the ICD-10 or MImms or the Maudsley or any main psychiatry textbooks. I already know that PTSD is a reactive condition that can worsen due to either prolonged exposure to severe stress or from a single life threatening traumatic incident (or perceived one). Medication (or rather drugs as I see them) could only be justified to reduce florid initi9al or acute symptoms but would NOT WORK IN THE LONGER TERM. Psychotherapy or CBT is the only thing that works on PTSD or Eye Movement Desensitisation Therapy, if the intervention is early enough. It is alarming that the team have mistaken my daughter’s diagnosis of PTSD which they are conveniently ignoring in favour of a label of paranoid Schizophrenia Treatment resistant which not one of us in the family believe. PTSD is a reactive psychosis and is of the sort that would be expected to be a single episodic event rather than a lifetime chronic condition and that is why atypicals are of limited use in treating it. Not only is my daughter’s treatment wrong in relation to a report she has been deprived by the team stating clearly PTSD – but the team have chosen to ignore NICE guidelines. I hope I get accepted on their panel as I have vast experience as to how these drugs have affected more than one in my family and there are other forms of treatment I have seen that worked whereas the drugs have all failed miserably. Instead of giving Lorazepam and Paracetamol for a headache Elizabeth went to lie down and what could be a better cure than this and accompanied with the pet cat Fluffy. I have not used one single extra drug and I am checking this extra drug treatment out thoroughly as this is very wrong in my opinion.
I have been to see the new GP before we left to come home. I took the new GP some research papers all about PTSD and told her all about the CEP and mentioned about underlying physical conditions and that I wanted my daughter to see a top leading Endocrinologist. I am also looking to have private tests done and have contacted the organisation responsible for the tests I want that are not available anywhere else. The GP had never heard of such tests for P450 liver enzyme – she is not the only expert that looked surprised – well they were all interested in such outcomes of the tests but I had hoped to arrange these during the time I am off. However these tests are so important that I have had to enlist the help of other family members in case I cannot get the time off work to take Elizabeth. Without the necessary proof of any underlying physical illness the team will just plod on and on and one dishing out the same drugs for a condition that is not the right one as it is very wrong of the team to ignore a report by a top leading psychiatrist of many years experience. Not only that I have sought other top level advice and done my own research and have plenty of this to back up my claims that my daughter has got underlying physical health problems and I as a mother want these thoroughly checked out so that she can get the right treatment and not only that I wish to share it. I wish to share the best care I hope to provide for my daughter not readily available so that everyone can benefit as it is appalling that I have had to go to such lengths when this should be available automatically through the GP. Anyway the GP did not have long to talk to me and said she had other patients to see when I showed her some evidence. I told the GP that my daughter had been given a life sentence that in my opinion was more important than a 10 minute slot and she admitted she had had no time to look at the medical files. Elizabeth has been in the care home now for a couple of months I believe and this is plenty time for any new psychiatrist or doctor to look at records especially in light of the serious level of drugs my daughter has been plied with.
Well the GP like the other private expert I have contacted are extremely interested in what I was saying. They had never heard of such tests and I hope now that this knowledge will benefit other patients – it is only because of the declining condition of Elizabeth that I have had no choice but to look thoroughly at everything and I do not believe in these labels – I believe in EVIDENCE – Scientific evidence which is what the CEP is all about and I would urge every parent to have a look at this organisation. The GP and private expert I contacted had never heard of the CEP – well they have now as I have told them.
I have been busy reading the research paper by a leading expert who I have contacted and in it is reference to liver enzymes and metabolism.
Leading experts would say “they are astonished at the ignorance amongst the medical profession about pharmacology. Concomitant prescribing without a thorough knowledge of first pass is negligent in the extreme. It is like taking control of a Jumbo Jet having had gliding lessons, except that drug accidents kill far more people than air crashes do.” “It is also absurd that ANYONE claims not to know about such tests. The Oxford Clinical Pharmacology and Drug Therapy refers to them as does the Maudsley Prescribing Guide. Quite obviously if it base ben determined that the P450’s metabolise drugs then they must have been tested somewhere. I as a mother would conclude that MEDICAL PROFESSIONALS ARE HOPELESSLY OUT OF TOUCH WITH MODERN PHARMACEUTICAL SCIENCE. What is more I have research on Metabolic Monitoring for Patients on Antipsychotic Medications, I have looked with interest at Selye’s Adaptational Syndrome and have been able to pass on such details to a friend of mine who son has come back from Afghanistan and who to my horror was about to see a psychiatrist. However as I have said there are some good psychiatrists but I have yet to meet the new consultant psychiatrist and am wondering what he is like after the one at the private sector hospital. This new psychiatrist was not available to see me and I do not know how often he visits my daughter or whether he knows that the dose of Clozapine is too high and should be 100mg. This information should be clearly mentioned under the NICE Guidelines so there is no doubt about what is correct.
I have made sure that Elizabeth is well aware of the new diagnosis of PTSD and she is more than happy to go along with the tests in order that the correct treatment can be given as what I am seeing now is not in the slightest bit therapeutic. I am shocked by the decline of my daughter – so shocked that I wish for all these young psychiatrists at the Institute of Psychiatry to be well aware of this. The training they are getting is wrong as it does not take into consideration physical health or proper assessments.
So the question is how many are misdiagnosed.
I have listened to other mothers who have given up – I have spent years fighting for better care however I wonder how many have really questioned whether the care is right for a start, whether the label is correct and whether the drugs are correct or not. First of all I looked at nothing else but the care and what had gone wrong but now I am looking at Evidence based science and every GP and Psychiatrist should look into all of this as I hope more and more mothers will question this as I am doing.
I am left thinking as well back to the childhood of Elizabeth. She was very ill as a small child. She was in and out of hospital with asthma and then had to undergo an operation for a strangulated hernia which the GP failed to diagnose first of all and then she was rushed in as an emergency. As she grew older the asthma disappeared and I was obviously pleased and one thing that did come to light later on when Elizabeth was referred to MH services was a cyst – this is an extra dural epidermoidoma/primary congenital cholesteatoma – an incidental finding. However there was evidence of mucosal thickening within the right maxillary antrum with minimal thickening in the left. I have plenty of charts and prescribing papers as well. When I checked with the new GP – the new GP had not been sent all of these papers. It is a good job I am checking on what is going on. This is where things go wrong where teams transfer files and this
is not done properly and then I have had to supply the information. The GP needs to check on this in my opinion and as she does not have this information I will supply it along with all the research papers that could benefit all the patients she has. The GP should be questioning what drug can be given safely with that prescribed by the consultant psychiatrist. As I am still astonished about the prescription of Metformine it is natural that I want further tests done and I am prepared to pay for such tests not available on the NHS.
If only an Endocrinologist can prescribe Metformine off label then I want to know why.
Elizabeth is constantly hungry – I have made sure there is nutritious food in the house – plenty of fruit etc. I have also been out with Elizabeth to buy some gluten free bread from a wonderful shop locally.
Anyway I shall keep you informed as to how I get on with finding the correct care for Elizabeth that could benefit everyone who has a diagnosis of “treatment resistant” when in fact they could have PTSD with underlying physical health problems.
The other thing I have been interested in and am reading is PANDAS. I shall write about this next time and maybe Elizabeth will wish to write herself on here tomorrow if she feels up to it.