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Children: unusual symptoms? Is it possible PA?

jimckeown profile image
4 Replies

Good evening. I wonder if i could get some guidance from this community. My 12 year old son has been struggling for years with his stomach nausea and low appetite. He also experience night terrors and episodes what he describes as “glitches” when he experience people’s voices racing and a loud bang to finish the “glitch” off. He has had many many tests and he is always described as a “sensitive” child. But I know something is not right for this chap. His energy levels are always lower than most of his friends and he battles to eat particularly in the mornings. My question is does any of this seem familiar - I am just searching for possible causes of his glitches before the paed puts him on meds??? (Which I do not want at all).

We have a grandfather with PA and we also have a younger son with Igg and IGM immuno deficient? I am just casting a net out there to find out if any of this sounds familiar to this community?

Thank you in advance!

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Sleepybunny profile image
Sleepybunny

Hi,

I am not medically trained but have heard of cases of children and teenagers being affected by B12 deficiency.

Links about children and B12 deficiency

b12deficiency.info/children...

stichtingb12tekort.nl/weten...

Have you considered joining PAS(Pernicious Anaemia Society) who can offer support and useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

There are articles in library section on PAS website about juvenile PA.

pernicious-anaemia-society.... See Page 2.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Parents

Parents who suspect their children may have B12 deficiency are not always listened to so I suggest seeking support.

Blog posts about parents of children with suspected PA/B12 deficiency

martynhooper.com/2017/07/21...

martynhooper.com/2019/06/04...

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

Lots of useful B12 info on above website so worth a good look.

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

All mention B12 deficiency in children/teenagers.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF info on UK treatment is out of date in this book.

See BNF links below for up to date info.

BNF Adults

bnf.nice.org.uk/drug/hydrox...

BNF Children

bnfc.nice.org.uk/drug/hydro...

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Other UK B12 articles

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives may be worth talking to if struggling to get recommended treatment in UK.

Best advice I ever got was to always get copies of or access to all blood test results and to check them carefully.

I was told on more than one occasion that everything was normal and I then found abnormal and borderline results when I got copies.

If checking a child's results, then please be aware that reference ranges for children can vary from ranges for adults.

PID UK

piduk.org/

UK charity for people with immunodeficiency.

As I said before I am not medically trained but I think that some immunodeficiencies may affect results of some antibody tests.

There are many possible causes of B12 deficiency besides PA eg Coeliac disease, Crohn's disease, internal parasites, some drugs and medicines plus others.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

NICE guidelines Coeliac Disease (UK document)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

I hope your son gets the help and support he needs.

It might be helpful to know which country you are in as treatment patterns for B12 deficiency, types of b12 used in treatment, reference ranges and units of measurement for blood tests can vary between countries.

Curtain96 profile image
Curtain96

Hi there,

My son has confirmed PA. He is 13 and was diagnosed at 12 by a B12 deficiency test. Myself and my mother also have PA we all inject once a week. My son was lacking energy & very pale. I was curious as to if he had PA. My advice would be to have him tested then you will definitely know. XX

sbadd profile image
sbadd

My daughter was diagnosed with low b12 at 13, she was constantly complaining of upset stomach and was pale and tired all the time, shes now 15 going on 16 and is alot better after receiving b12 injections, she was also low on iron, she tested positive to one of the PA tests, so yes children can suffer from b12 deficiency.

jimckeown profile image
jimckeown

Thank you all so much such helpful advice. I will go get him tested.

The poor chap has such a terrible fear of needles is it only possible to improve your B 12 with injections?

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