PLT Test Blog

RMS Carpathia  picked up Titanic survivors from life boats, the others had drowned I was recently asked by some friends of ours, how come Monty, now aged 16 with autism, has changed so much over the last ten years. It turns out they have a relative with a 12-year-old son, who has autism and does not speak. A few weeks later I was asked to have a chat with the boy’s mother and tell her what I have been doing, regarding treating autism, for the last 13 years.   Following the standard practice where we live does not give good results.   The boy does not talk, was not taught sign language, or to use any augmentative communication device, he cannot write and cannot read.   He goes to mainstream school and has a 1:1 assistant, but what does he learn there? When we started treating Monty after his diagnosis aged three, he was entirely non-verbal, cried a lot and was not interested in anything.   From the age of four he was sitting at a little table being instructed at ...

Dr Frye is embarking on a multi-million dollar trial of Calcium Folinate (Leucovorin) to improve speech in autism.   I just completed my much humbler trial of a cheap generic Calcium Folinate. I determined it was far cheaper and simpler to make a trial, than arrange for the blood test.   The other reason is that I note in the US they are prescribing Leucovorin, even if you test negative in the test for autoantibodies. http://iliadneuro.com/order-a-kit.html Dr Frye thinks many people with autism have low levels of folate inside their brain due to antibodies blocking folate crossing the blood brain barrier.   He even suggests that perhaps the source of these antibodies is your gut and they are produced as a reaction to cow’s milk. I wondered why speech would be so directly affected by folate, but speech is something that is very noticeable and measurable. I used 30mg of calcium folinate at breakfast and 15mg in the evening. After a few days there was very clearly more speec...

This week I received a message: - “Your Bumetanide treatment is on trial among 25 teenagers here and parents are loving it” My reply, brief as usual (unlike my blog posts) “Great!” I did not mention that in the first phase of the trial 50% of the teenagers are going to be on the placebo.   It is Dr Ben-Ari’s treatment. A clinician told me that all the parents of children, to whom she has prescribed bumetanide, think their children are responders and is wondering how to deal with the parental placebo effect. I had another clinician telling me, “I guess from your experience with the blog, most people are not responders to Bumetanide”.   Then came an analysis of the recent tiny study in China that showed on average there was a measurable improvement on the CARS scale (Childhood Autism Rating Scale), but the question arose was “is this response large enough for parents to notice?” Memantine (Namenda) A few years ago, Memantine was also trialled at the University Hospital where we...

You might be thinking this post is going to be about how the whole family have symptoms of autism, or the cases when siblings without autism, have facial or other features that are associated with autism; it is not.   If you prefer that subject, follow the link below. Siblings of autistic children may have distinct facial features This week I learnt a new term from Monty’s 1:1 school assistant, for when the family unit of a child with autism becomes dysfunctional and everyone is negatively affected.   Those in the autism business call them “Autism Families”. Monty’s family, she went on tell me, is not an Autism Family (I guess we are a Family with Autism); “you have protected them” and Monty’s brother (his only sibling) is totally normal. We had been discussing how NT siblings can suffer and become maladapted themselves, due to the situation they live in at home.   The rules at home can change; the rules for bringing friends home can change, the rules for going out change...

Today’s post is about both drinking too much water and drinking too little water. Polydipsia (drinking too much water) is a known cause of death in autism and schizophrenia.  A big part of the reason we talk about autism being a spectrum, is the pioneering work of an English Psychiatrist called Dr Lorna Wing.  Wing outlived her daughter with severe autism, because her daughter Susie developed Polydipsia around the menopause and this caused the sodium level in her blood to fall to the point where her heart stopped beating and she died.  Even though Mum was a (retired) doctor, the condition was not resolved; but Susie’s death should have been avoidable.  Polydipsia is treatable and people should not be dying from it. Hypodipsia (drinking too little water) can occur in older people, who are neglected in care homes and for a wide range of other reasons.  People with autism treated by the diuretic Bumetanide are at risk of Hypodipsia and indeed this accounts for some...