Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

What Can the Mother Do?

by | Jun 4, 2019 | 8 comments

I’m quite good at answering people’s questions when they telephone the Pernicious Society’s Office, after all I do have eleven years’ experience in dealing with members’ problems with getting a diagnosis and adequate treatment. But I took a call last week which not only shocked me, but left me unable to offer any help. That’s why I’m writing this – I’m hoping that one of you will be able to offer me, and the caller, some advice on how to deal with this particular issue.
I have never known the joys of parenthood – a decision I took when I was fourteen. With twenty odd years of teaching other people’s children I am aware of the challenges that children bring with them and I’ve never regretted that decision that I took all those years ago. This particular problem involves a young child which I have been unable to help with, hopefully you can advise me.

Developmental Delay

The call came through on Wednesday last. I had spoken to the lady before. Her particular story is bad enough; it took ten years for her to be diagnosed and she has been left a shadow of her former self as she struggles to cope with everyday life and has lost her business that she had built up over the years.
She has two children, one is two years old and the other is nine. The call was about her nine-year-old who has had problems in the past including development delay. The mother, concerned that her children might also develop Pernicious Anaemia is vigilant for the symptoms. He is still night-time incontinent and wears nappies to bed which is worrying enough. When he started complaining about feeling tired all the time the mother asked her son’s doctor to test his B12 levels. Guess what? The results showed he was deficient with a reading of 140pm/L. The laboratory’s reference range is 180 – 900pm/L – so he is clearly deficient.
Now, I say ‘is’ clearly deficient because he still is; the GP told the mother that the readings were perfectly fine for a nine-year-old and refused any treatment. And that’s why the mother telephoned our helpline.

A Dilemma

“I really don’t know what to do” she told me. “Should I go ahead and treat him?”
And this is the dilemma that parents face in such situations. Firstly, she would be ignoring medical advice based on the GPs clinical decision and that wouldn’t look too good in any court proceedings. Secondly, if she was to administer injections then not only would she be guilty of assault and perhaps Grievous Bodily Harm, but also there is the danger that the child has a severe reaction to the injection in some shape or form including suffering an anaphylactic shock which would require urgent medical intervention. There is the option of using alternative delivery methods such as patches, sub-lingual tablets and sprays, but again, this could be seen as going against medical advice and possibly abuse of a vulnerable person.
However, doing nothing will almost inevitably mean that the youngster’s health would deteriorate with the very real chance that he will develop serious and irreversible nerve damage.

I really am at a loss to offer her advice. She has spoken to a personal friend who is a practicing Paediatrician who, rather unhelpfully told the mother that the GP was ‘a fool’ but could offer no other support.
I spoke with the mother again yesterday and suggested that maybe there are other mothers out there who have faced the same problem and that, in the hope that there can be a positive outcome, I might write this blog to invite my readers to offer some advice. Please keep any comments positive and avoid making any comments on the GPs behaviour. We, that is the mother and I, are really hoping that someone might offer a solution.

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  1. Frank Hollis

    What a horrible dilemma.

    One way to cope with the possibility of an anaphylactic reaction would be to take the child to one of those ‘health’ places that offer injections at exorbitant cost. But it’s quite likely they would refuse to treat somebody so young.

    I presume the mother is giving the child high-dose oral B12 in the hope that some might be absorbed.

    Everything does sound exactly like the symptoms listed in this paper – – which also mentions the possibility of megaloblastic anaemia (which the doc may be using as a prime diagnostic measure) being masked by folic acid intake.

  2. Jenny

    What a terrible situation. I await nervously to see if my son will show any signs, but so far so good. My only thought is to go to another doctor. Although expensive, maybe find a private doctor who is more aware of B12 issues?

  3. Karen

    I think initially, the mother should seek a second opinion, as she is legally entitled to. If she needs help, I would suggest she contact PALS or her local Healthwatch on how to proceed. I know we all want to avoid making a formal complaint due to the power imbalances of the GP/patient relationship, but if she doesn’t get any joy, this would be an entirely appropriate response.

    If she feels she still isn’t being offered correct treatment, there may be a local advocacy service who may be able to help. This would usually be free of charge. Alternatively there may be a local scheme for pro bono legal advice. The local Voluntary Services may be able to advise on what’s available locally too.

    As we’re talking about a child here, there may be some benefit in discussing this with the NSPCC who have a helpline.

    Does the child have a social worker or learning disabilities nurse who could advise, or even a school nurse?

    It’s difficult to give any specific advice without knowing more about the child’s disability or area they live in. I’m certainly not a legal expert, but have worked in advocacy and healthcare for a number of years in the past. If you want to contact me direct I’m happy for you to do so.

    Good luck!

  4. Angela

    I had a similar situation. I sought a second opinion privately (just found a superb gp who listened) think it cost me £75. Together we found a way through and I got all the relevant medical test done to prove my son was deficient. The rest of the doctors had to eat humble pie. My son was older by the time we finally got to the bottom of the issue but it started at 10 years old and took 7 years. It’s very difficult to get any testing done on a child without a doctors support. For me it’s was funding that right doctor. That doctor changed our world. Best of luck to this family xx

  5. Sarah

    Is there a chance that HDA patient care trust might be able to offer the mother and child a chance of seeing a specialist for a second opinion?

    I was told they are a charity in the UK who help people who are worried about diagnosis and treatment.

    They used to be called The Honorary Doctors’ Association.

    Tel 0207 935 8366


  6. Clare Birschel

    Martyn – this could be my story

    My daughter is 11 and I’m trying to get her treated. I had severe neurological symptoms at a level of over 400. My daughter’s level is just over 200.

    She has pains in her legs, is getting forgetful and really clumsy. She is irritable which is not like her.

    She was premature – another red flag

    She has chronic constipation and still wears “pyjama pants” as she can wet herself in her sleep – both red flags

    She said recently “the soles of my feet feel hot” – another red flag

    I can’t get her out of bed in the morning – another red flag

    The paediatrician she saw said (brace yourself) “kids don’t get B12 deficiency!” I kid you not….

    She is not as bad as this child but I am watching her slowly deteriorating

    I would love to know what to do too

    PS I’m the lady who came and spoke to you at the Glasgow meeting last year after your presentation

  7. Susan

    I would change GP. I would report the GP who refuses to give B12 to someone (no matter what age) to the authorities as ignoring a below range result. He would need to give clear reasons for not treating which he would not be able to do and hopefully he would be struck off. If a second GP followed suit I would keep changing GP until I found a good one. Indeed I went through three for my own problems. When my daughter had problems her blood tests were “normal” so a different dilemma. In her case I went private and it cost me a lot of money but the private consultant identified a severe vitamin D deficiency and sent my daughter for a bone scan and her bones had been affected after 4 years of GPs ignoring symptoms and failing to run the correct test. I am heartened to see on Dr Chandy’s book reviews on Amazon that Annie Barr International are addressing the problem of GP training and see the Royal College of GPs are giving 6 CPD credits for GPs to attend the course. It is a battle but a good mother has to keep fighting for her children but stay within the law. Vitamin B12 injections are a prescription only medicine and until a legal case is made will remain so.

  8. SHandell

    Firstly, this is such a sad story for the mother and child. A message to the mother….My husband was misdiagnosed for around 4 years and eventually it was a cancer specialist that he was referred to who picked up on the fact that he has Pernicious Anaemia. Once we knew it was B12 deficiency we went to work on finding out as much information as possible which the PAS forum greatly assisted us with, and we don’t know where we would be now with their help. My husband was suffering with neurological damage and could not feel his legs from his knees down. He was also very tired and his skin went grey and hair was almost white within 3 weeks of hitting rock bottom. We started injections ourselves at home as our local GP did not want to listen to the information we had found out about the developments in the disease. Anyway long story short we do not and have never had any issues commencing injections (as long as you have access to B12 of course). In Australia we can buy it over the counter luckily. I give my husband an injection whenever he is feeling low, which could be once a month or it could be once a week. It’s not as scary as it sounds and it has changed my husbands life and and mine and he can function normally. It’s definitely worth a try, depending on your circumstances, but we’ve never looked back. My husband can feel his legs again, has his skin colour back and gets to watch his children grow up which is all we wanted. Don’t worry about “what if’s” just go with your gut instinct. Good luck with everything xxx


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