The Ignorance of Vitamin B12 Deficiency in Children

B12 is tragically undiagnosed and misdiagnosed in children, for many doctors testing for this deficiency is not even on their radar so it’s missed. In the rare cases when it is tested, there’s every likelihood it won’t be diagnosed due to the dangerously low lab reference ranges in the UK – as ridiculously low as 110ng/L at East Lancashire NHS Trust. If a child is vegetarian or vegan and is not being given a supplement for B12 or was breast fed by a vegetarian or vegan mother who was not advised by their clinician’s to supplement B12, the risk of this deficiency is much higher.

In children who are heavily symptomatic and their deficiency it is not diet related, they may have B12 serum levels which are within range or even look like ‘healthy levels’.  It would be pertinent to carry out further tests such as MMA, Homocysteine and the Active B12 test please visit http://b12deficiency.info/testing.html  Sadly the B12 serum test is flawed but this information is taking it’s time to filter through to clinicians. See here – http://www.ukneqas-haematinics.org.uk/content/News.asp?id=40

If all symptomatic children with a B12 level below 500ng/L were treated without question and worried parents pleas for help listened to, this would go some way  towards halting the untold suffering that families cope with every day. Tragicaly though, many of these children leave their doctors surgery with drugs to treat a misdiagnosis of autism or ADHD. These drugs may or may not modify their symptoms, but the fact remains that deterioration caused by the lack of B12 will continue without the essential injections. A therapeutic trial of B12 injections would be extremely valuable for ‘within range’ symptomatic children. These should be carried out with continuous every other day injections in the presence of neurological symptoms. http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

If a family has a high prevalence of diagnosed Pernicious Anaemia then it is quite simply ridiculous not to screen children in these families. In adults this deficiency, if identified early enough, can be treated effectively and simply, reversing all symptoms. In children the story can be very different, the nervous system is still developing and if this vital nutrient is lacking then the damage may be irreversible.

All health professionals need to eradicate the incorrect idea that this deficiency only affects women over 60. They also need to listen to terrified parents who know that their children are suffering from the same serious symptoms that they themselves, experience.

See the information below supplied by Sally Pacholok R.N. and Dr Jeffrey Stuart.  It would also be a good idea to buy their book – it really does save lives.

Signs & symptoms in infants and children

• Developmental delay or regression.

• Apathy – Irritability.

• Hypotonia (decreased muscle tone).

• Weakness.

• Tremor.

• Involuntary movements.

• Seizures (fits).

Ataxia (Neurological disorder affecting balance, coordination and speech).

• Anorexia and other eating disorders.

• Failure to thrive.

• Poor weight gain.

• Poor head growth.

• Poor socialisation.

• Poor motor skills.

• Language delay.

• Speech problems.

• Lower IQ – Mental retardation.

• Anaemia.

• Macrocytosis (large red blood cells) Note – need not be present!

Red flags of B12 deficiency in infants, children and Teenagers

If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency.

• Movement problems, including difficulty in walking or writing.

• Mental changes – irritability, altered mood, poor memory, “flat” emotional tone, autistic-like withdrawal.

• Vision problems/abnormalities.

• Slowed weight and height gain.

• Leg pains or other abnormal sensations.

• Fatigue.

• Loss of appetite.

• An abnormally small head circumference in infants or toddlers.

• Apathy,lethargy, or irritability.

• Involuntary movements, such as arm waving in infants or toddlers.

• Tics.

• Grey hairs / premature greying.

• Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child.

• A rooting reflex after eight months of age (this reflex is usually absent after six months of age.

• A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body’s stores of B12 and cause severe neurological damage.

• Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health).

• Chronic constipation.

• A diagnosis of developmental delay, autism, cerebral palsy, mental retardation, or other neurological disorder.

• Severe food allergies or sensitivities.

• A diagnosis of coeliac disease or gluten enteropathy.

• A thyroid disorder or other autoimmune disorder.

• A history of stroke or a diagnosis of arteriosclerosis.

• A diagnosis of any psychiatric or behavioural disorder including ADHD.

• A diagnosis of Downs Syndrome.

List Information provided with kind permission of Sally M. Pacholok R.N. & Dr. Jeffrey J. Stuart.

Best wishes, Tracey

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Please visit

http://www.b12deficiency.info/children-and-b12.html

Raising awareness;

http://www.b12deficiency.info/how-you-can-help/

Imagine being sectioned for a vitamin B12 deficiency…….

Imagine feeling that taking your own life is preferable to fighting your doctor for your right to this essential vitamin

Imagine being tested for B12 deficiency and even though the serum test shows you are deficient, your doctor denies treatment because she doesn’t believe that your mind can be affected

Imagine a newly qualified doctor telling you to eat more broccoli to build your supplies of B12

Imagine pleading for injections for your severely B12 deficient child only to be ignored, all this whilst the doctor calls social services to accuse you of starving your child

Imagine a helicopter police hunt for a desperately deficient OAP whose doctor thinks that three 50mcg oral cyanocobalamin B12 tablets per day will correct their severe deficiency

Imagine your child being given a diagnosis of autism only to find later that B12 deficiency was the correct diagnosis

Imagine being bed bound and unable to look after your children or yourself because your doctor thinks B12 is a placebo and will not allow B12 injections more frequently than every three months

Imagine studying hard for a career only to find your undiagnosed B12 deficiency makes it impossible to work or contribute to society in any way

Imagine being treated for cervical cancer when B12 deficiency caused your abnormal pap smears

Imagine becoming anorexic and being admitted to a mental health ward where the doctors involved in your care don’t understand that anorexia is a symptom of B12 deficiency

Imagine being diagnosed with post natal depression after enduring a long labour with B12 depleting ‘gas and air’ and only being treated with drugs instead of the vitamin your body has been starved of

Imagine being labelled as a lazy hypochondriac when you haven’t the energy to raise your head from your pillow because your doctor says a three monthly injection is adequate treatment

Imagine being one point above a B12 serum test’s lowest range, with screaming neurological symptoms and being denied treatment because a doctor says your level is ‘normal’

Imagine being unable to remember the names of your loved ones, how to cook, how to read music, how to drive your car

Imagine being tested and probed for other ‘more serious’ illnesses in your quest for a vitamin you know you need but medical professionals simply don’t

Imagine being fed a cocktail of antipsychotics, antidepressants, antiepileptics, lithium, and pain killers, when all you really need is a B12 injection every other day until your myriad of symptoms stop improving

Imagine a night out partaking of some supposedly, harmless ‘hippy crack’ (nitrous oxide), and later finding that you can’t walk and that your doctor never puts 2 and 2 together

Imagine being misdiagnosed with MS due to your doctors ignorance of B12 deficiency

Imagine knowing that other countries allow their citizens to buy this essential injectable vitamin over the counter but in the UK it is restricted and rationed

Imagine being diagnosed with Alzheimer’s, or dementia in your 20’s or 30’s when it’s simply vitamin B12 deficiency causing your appalling memory problems

Imagine having repeated miscarriages and rounds of unsuccessful IVF only to find that £10’s worth of vitamin B12 injections could have you on the road to natural conception

Imagine your healthy baby becoming floppy, unresponsive and failing to thrive but never finding that elusive doctor with a comprehensive knowledge of B12

Imagine your child being arrested when their anger and aggression is due to desperate under treatment for B12 deficiency

Imagine finally giving up after you have fought for help from your doctor, only to be continually ignored and told that your symptoms are all in your mind

Imagine knowing far more about B12 deficiency than your GP or any of the specialists your doctor has referred you to

Imagine being accused of alcoholism when you’re tee-total but your gait and speech are affected by B12 deficiency and you’re denied B12 injections 

Imagine an ignorant consultant calling Social Services to accuse you, a loving parent, of causing your child’s malnutrition when you have a family history of B12 deficiency

Imagine being mistakenly prescribed acid suppressants when your stomach acid is already too low to absorb B12 and then finding that eventually your legs fail you

Imagine being diagnosed with B12 deficiency and knowing you will need treatment for life but having an ignorant doctor stop your injections when the serum B12 level is ‘within range’

Imagine having repeated cardiac arrests, prolonged stays in mental health units and when you finally work out that you are B12 deficient, being denied treatment

Imagine a life with this condition, when your family and friends don’t understand your many symptoms and who tell you ‘the doctor must know best’

Imagine finding a below range B12 result in your notes from years ago and realising that your confinement to a wheelchair and permanent neurological damage could have been avoided if only you’d been given B12 injections

Imagine just how devastated healthcare professionals feel when they realise the harm that may have been caused to patients because their training lacked vital information on B12 deficiency

Imagine the savings to the NHS and to health care systems worldwide if ignorance of B12 deficiency is addressed……………….

All the above will continue to happen until something changes.

If you think you may be B12 deficient please start on the What to do next page.

If you find yourself or a loved one in any of the above situations and require personalised help, please see my contact page for more information.

If my site and blog have helped you please consider adding your testimonial.

Best wishes, Tracey