many thanks to this site for supporting me through my recent diagnosis and treatment. Your support has encouraged me to find out as much as I can from the Internet and I feel that that knowledge has given me power. Unfortunately that research has thrown up some information that I am unsure how to proceed. My grandson is 12 but the size of a 8 year old, he was borne with a bowell problem and has lived his life on laxatives. He is very underweight and has an eating problem. He sees a dietician once a year and a bowell specialist once a year and although his mum has asked for further help none has been offered, he is so white that he looks grey. his size is put down to him being a fussy eater. While researching b12 I uncovered info about children and it all seems to fit. I want to get a private test done as soon as possible but his mum is worried we will upset the doctors and we can't tell then their job!!! I say if we get a private test done and he is not deficient then the doctors don't need to know. However we all know if the numbers are low it does not mean treatment and if that is the case do we supplement ourselves and if so how much???
Could my grandson be b12 deficient - Pernicious Anaemi...
Could my grandson be b12 deficient
Hi,
Sally Pacholok and JJ. Stuart the authors of "Could It Be B12" have written another book
"What's Wrong With My Child? From Neurological and Developmental Disabilities to Autism.......
How to protect your child from B12 Deficiency. "
Both books include info on B12 Deficiency in children.
I found reading Martyn Hooper's books useful. He is the chair of the PAS (Pernicious Anaemia Society).
"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper is his latest.
In the past I have got copies of my children's blood tests, which a parent has a right to in most circumstances. After being told everything was normal, when I got my child's results several tests were borderline but GP was not interested so I have to keep my fingers crossed that my child will not start to show symptoms. They have even refused to do repeat blood tests.
Has his mum got copies of his ferritin, folate, B12 and Full Blood Count tests. I learnt through experience that what I was told was normal to my face or over the telephone was not always normal when I got a paper copy.
Did you know that the reference ranges are different in most blood tests for children compared to adults. I try to check whether the correct reference ranges have been used for my child's tests. These might be found by a search on local NHS website or by an FOI (Freedom of Information) request to local NHS website. Your grandson is at an age where he may be considerd an adult for some blood test ranges. Reference ranges vary from area to area and B12 ranges seem to vary a lot across the UK.
"he is so white that he looks grey"
Pale complexion can be a sign of B12 deficiency. See link below under Haematological signs.
b12deficiency.info/signs-an...
This link lists possible causes of B12 deficiency. There are several causes linked to the bowel.
b12deficiency.info/what-are...
Have you rung the PAS? You do not have to be a member to ring them. if you leave a message they will get back to you. May be the PAS can recommend info on PA and B12 deficiency that is specific to children?
pernicious-anaemia-society....
01656 769467
Office open every day except Sundays between 8am and 2pm.
The library section has a document about Juvenile PA but you need to be a member to access this one.
"but his mum is worried we will upset the doctors and we can't tell then their job!!!"
I've given up worrying about upsetting doctors although I never set out to deliberately upset them. If I had accepted what I was told without questioning it, I think I would be showing signs of dementia and possible spinal cord degeneration by now.
I think professional pride has made it difficult for some medics to accept that a patient can be well informed and sadly better informed than they are sometimes.
another useful website
Wow that is really helpful, I will try and download books to start reading today
I have grandchildren and am concerned for their well being. One of my grandsons was here on holiday last year and so I had him tested for Ferritin - Folate - Iron - B12 - VitD. They were low and around and below the bottom of the range in some cases. His UK GP was impressed at the range of tests done here in Crete - but then I had learnt it all from here and TUK on HU. However I would have liked his GP to take it a step further as to why everything is so low - MMA and Homocysteine testing perhaps.
He has so many deficiencies and I have witnessed his decline over the years from an almost 5 year old writing stories on my computer - with illustrations - a variety of text and so on - to a young man who comes home from school and falls asleep. His schoolwork has suffered too and 6th form is proving a problem....it absolutely breaks my heart. My daughter has suffered Thyroid cancer and had further surgeries for cancer - and works full-time as a single Mum. Seeing him every day is possibly not allowing her to see the changes I see. I think we Nanas are intuitive and have been through it all before.
Please do not be concerned about upsetting the GP - we have every right to challenge - they cannot possibly be experts in every field as the word GENERAL Practitioner illustrates.
Your grandson obviously has an absorption issue so maybe it's time to check out if he is a coeliac or has low stomach acid. Maybe check the thyroid too.....that can casue slow motility in the gut. Also the HGH - Human Growth Hormone - as he is small. Pituitary issues ? Sorry so much to think about..... my grandson had delayed puberty compared with his peer group - which I have read can be linked to anaemia....
And so it goes on.... Good for you in banging the drum :-0
Marz mentioned low stomach acid. The symptoms of low stomach acid are very similar to those of high stomach acid so patients are sometimes diagnosed with high stomach acid when they actually have low stomach acid. High stomach acid is treated with PPI drugs which can interfere with B12 uotake in body.
drmyhill.co.uk/wiki/Hypochl...
Is your grandson on any medication? There are some drugs that can interfere with B12 uptake and some that interfere with folate metabolism.
b12deficiency.info/what-are...
See section on drug induced B12 deficiency
Has your grandson ever had surgery involving nitrous oxide?
gov.uk/drug-safety-update/n...
Coeliac Info
It is possible to have Coeliac disease even if test results are negative.
coeliac.org.uk/coeliac-dise...
coeliac.org.uk/coeliac-dise...
I am not a medic just someone who has struggled to get a diagnosis and wants people to have the info they need.
Are there autoimmune conditions in the wider family? Sadly autoimmune conditions can come in clusters.
Some people can have deficiencies in their immunoglobulins.
piduk.org/specificpidcondit...
Oh my goodness! I have downloaded the book recommended by sleepybunny and I don't know if I am putting 2&2 together and making 6 but I have now diagnosed a lot of my family with b12 deficiency. The one grandson I wrote about that is not thriving and has started having strange behaviour, his 5 year old brother who is autistic, their sister who I know has b12 of 290 as it came with a bundle of tests done in October when we proved she had a vitamin d deficiency. Their father, my son who has spinal nerve problems that are believed to be from a slip disc he had treated 5 years ago and my daughter who had fertility problems even after 3 attempts at ivf. Is this possible or am I imagining it. (I am not prone to hyperchrondriac personality)
I think you are on the right track as so many people eat differently to the way we did years ago. Foods containing B12 like liver/kidneys/heart are often shied away from. Way back we had cod liver oil with malt - think it was called Virol - not the best tasting stuff - but had a spoonful before going off to school 
Considering that B12 is involved in so many issues it is amazing that so many GP's remain in the dark. We have to read and learn from the good people here and from books and websites. It can be overwhelming but worth it in the end.
Fertility can be linked to low thyroid too - which is also missed by GP's as they rely too heavily on just the TSH test which tells you very little. Again like B12D they need to look at symptoms too. This seems impossible when there is a 10/12 minute appointment. Easier to treat all the various symptoms without finding the root cause.
anhinternational.org/2015/1...
Maybe the above link illustrates what is wrong. Scroll down for the 4 minute video !
I have read that it is possible for B12 deficiency to run in families but important to bear in mind that some conditions can have multiple causes, not necessarily B12 deficiency. I have read that B12 deficiency can cause fertility issues and autisistic symptoms. This is mentioned in Sally Pacholok's book "Could It Be B12"
"sister who I know has b12 of 290"
It is possible to have severe B12 deficiency with normal blood levels of B12.
See below links for info.
ukneqas-haematinics.org.uk/...
Also worth reading in my opinion "BCSH Cobalamin and Folate Guidelines"
This document came out in 2014 but sadly some GPs are not aware of it. I gave a copy to my GP.
When after years of illness I found out more about PA and B12 deficiency it was like a light bulb moment. I suspect some of my other relatives may have B12 problems.
you might find it interesting to read about MTHFR gene mutations.
"do we supplement ourselves "
For me self treatment was an absolute last resort as I could not get treatment from NHS. I still wonder if I did the right thing as treating myself has made it impossible to get a diagnosis from NHS although I am still trying after many years of illness. See link below on this issue.
b12deficiency.info/b12-test...
"I am not prone to hyperchrondriac personality"
Some people with B12 deficiency get diagnosed with hypochondria and are told their physical symptoms are psychosomatic.
It wouldnt hurt to get a private test done for your own peace of mind if the gp wont call in relevant blood tests.
But as he is so young it would be good if the gp and other consultants were on side as he still has a long life ahead of him. But by the same token using over the counter vitamins are recommended by most gps anyway, even children.
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