Low B12 in babies?

[Snowflake16]

My late mum, myself and my daughter all have pernicious anaemia. My 3 month old granddaughter is struggling to gain weight, has a very high pitched cry and shows some unusual, potentially neurological signs. I wondered if anyone knew if babies that young are likely to have low B12 levels. Thanks for any advice

[Nackapan]

Get her levels tested. And your daughters if breast feeding.

Your granddaughter need checking which i assume is happening.

Do ask for b12 to be checked along with everything else

Hope you find the cause soon to remedy it.

[Sleepybunny]

Hi,

I am not medically trained.

Has your grandchild been referred to a paediatrician?

Some parents and grandparents with concerns over possibility of B12 deficiency in children are not always listened to.

I suggest you and your daughter join and seek support from PAS(Pernicious Anaemia Society)

pernicious-anaemia-society....

See blog post below about parents of children with PA which discusses some of the difficulties.

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

PAS website has articles about PA in children.

pernicious-anaemia-society....

Links about B12 deficiency in children.

Some details may be upsetting.

b12deficiency.info/children/

stichtingb12tekort.nl/engli...

Above link is from Dutch website- units, ref ranges, treatment patterns may vary from UK

I have read that nitrous oxide which is in gas and air mix, inactivates B12 in the body.

Did your daughter use gas and air during labour?

B12 books I found useful

"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BNF treatment info in book is out of date.

"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".

[Showgem]

Look up congenital pernicious anaemia. A friends baby failed to thrive and almost died from this condition. Please see your GP to arrange for your granddaughter to have blood tests for intrinsic factor and b12 as soon as possible. Is your daughter being adequately treated? If her b12 level is low and she is breast feeding the baby won’t be getting enough b12.

[Snowflake16 in reply to Showgem]

Thanks Showgem - do you know what symptoms your friend's baby had and how old the baby was when diagnosed? What sort of treatment did the baby get? Thanks

[Showgem in reply to Snowflake16]

It was a long time ago and I'm not certain but I think she was under 1 year old. She was hospitalised as she became very poorly before she was diagnosed. She received b12 infusions as a child.

[Snowflake16]

Thank you for all your helpful comments. My daughter receives 8 weekly hydroxycobalamin injections from the GP but we supplement her over and above that. She is breast feeding but I have been trying to persuade her to give Lola some formula too as that will supplement the B12 she gets. The Heath Visitor is concerned about her weight so I think we need to push her to discuss it with the GP too. I might just be an over anxious granny but I have read too many horror stories in this and other forums to be complacent. From previous experience, I fear we may have a battle on our hands convincing the GP to take all this seriously.

[Nackapan in reply to Snowflake16]

Yes. I'm glad the HV involved ad 3 hourly bf will probably be suggested and yiur grandchild is being monitored

The H.V csn push for tests and Gp intervention. So it shouldn't be a battle .

Your daughter sound's like shes onto her nutrition and supplements .

So breastmilk good.

It's her b12 thst will naturally decrease post -natally.

Just Keep feeding your daughter !

Hope it all resolved very soon.

T c

[Sleepybunny]

Hi,

Some links to symptoms lists.

These could be upsetting to read.

Although I think more aimed at adults, some of the links mention children's symptoms.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

I searched online for "B12 deficiency babies" which showed several links but felt that some of the details in articles were upsetting so didn't want to post them.

I think your best bet is to speak to PAS as soon as possible as I'm sure they could signpost you to useful info to pass to GP.

You would need to join PAS to access helpline number.

PAS membership

pernicious-anaemia-society....

PAS have some members who join on behalf of children who are too young to join themselves.

There is ignorance about B12 deficiency in some doctors in UK and elsewhere and some doctors including some paediatricians may not be fully aware of the signs and symptoms of B12 deficiency in babies and children.

The person who runs B12 Deficiency Info website has helped some people on this forum.

b12deficiency.info/

NICE Pathway on Faltering Growth in Infants/Children

pathways.nice.org.uk/pathwa...

I can't see a direct mention of B12 deficiency in the above link or possibility of PA.

Checking for coeliac disease is mentioned though.

See Point 5 in letter writing link below

b12deficiency.info/writing-...

If you scroll right down Point 5 section, there is a link to a PDF of inborn errors of B12 metabolism.

Another blog post below about a parent of a child with B12 deficiency

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

[Sleepybunny]

Hi,

I came across this NICE guidelines which I thought you might find interesting.

It's about babies, children and young people's experiences of health care and was published August 2021 so up to date.

nice.org.uk/guidance/ng204/...

The advocacy and support section says that parents or carers should be involved in discussions and decisions about the care of babies and yound children.

nice.org.uk/guidance/ng204/...

[Sleepybunny]

I searched online for "uk private paediatricians" and it is possible to see a paediatrician privately in UK.