The story begins with me having had a rough 3 years trying to get a B12 deficiency diagnosed. My mum gets injections, my nana had a deficiency and both her parents had pernicious anaemia. I've had 3 injections now but not reacting well and that's a whole other long story....
I suspected my children were both B12 deficient and asked for them to be tested. I have an 18 year old autistic daughter and a 4 year old boy. They have now been referred to haematologists. My main concern at the moment is the 4 year old as he is due to undergo surgery for removal of his front teeth after falling. He would require a general anaesthetic for this.
His results were
Hb 126
Ferritin 11
Folate 6.1
Vit B12 326
Homocysteine 18
Vit D 26
His current paediatrician has not begun treatment for vit D despite him being supplemented prior to the test with 400iu(I have black skin) and I've just received a letter today to say his homocysteine is normal however I am worried that she's missing something. I thought below 15 was the norm and single figures preferable although this may be for adults?
He was long term breastfed
Has dairy wheat nut allergy
Small stature
Aches in legs, hips and all over
Restless legs
Deterioration in mood
Irritable
Dusky around lips and nose
Dark circles under eyes
I know some of these symptoms are low vit D but I'm just worried sick about him being left untreated for B12 deficiency.
I've started giving him B12 spray which has helped and he just seems happier but I fear he is not getting enough and going for surgery on 15th Sept could be risky.
Could anyone offer any help or advice? I used to be a nurse and am appalled that I was never taught about any of this. It's shameful what's happening to people around the globe.
Thanks in advance!
Written by
Vjmac
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Hi Vjmac. Hello and welcome. I've come to your post too late to leave a proper reply tonight but just wanted to leave words to reassure you that we will be able to give you information and support.
In the meantime, it would help us if you could provide reference ranges for the above results as its a bit difficult to interpret them properly without these.
Also - did your son have an full blood count (FBC)? If so, it would be really useful to see the full results for that.
Briefly - but more words of explanation on this tomorrow - the anaeasthetic gas nitrous oxide should be avoided if B12 deficency is suspected (it deactivates B12 circulating in the blood) and whilst this is not a problem where good liver stores of B12 are available for release, it can be an issue if B12 is deficent or low (I'll leave you some information that you can share with the anaesthetist, tomorrow). Avoiding nitrous oxide shouldn't be a problem because there are other anaesthetic gases that can be used instead.
And in brief - in adults, homocysteine can be raised in cases of B12 and/or folate deficency - though I'll have to check what the values are for children - and it would also help if we can have the reference ranges.
In view of the strong family history of PA and B12 deficency, there is an increased likelihood that PA or B12 deficency from other causes may be an issue, as you know 😉.
Have you considered joining the Pernicious Anaemia Society? The Chair, Martyn Hooper, can offer good advice, advocate with GP's if necessary...and he's always really keen to help when children are concerned.
I'm sorry that this is quite short and I'm not able to leave any guidelines and information, right now. I'll do that tomorrow. And others will no doubt be along to offer help and advice too.
Just didn't want to leave you with no replays if you're still up worrying (it's what mums do 🤔).
And I agree about the lack of training for nurses (and doctors too). I am an ex-nurse and only knew the bare minimum about B12 deficency or PA - until I developed it.
👍
P.s. You can edit your original post to add reference ranges and any other results you have. Just click the third box along at the bottom of your post (next to follow post box) and it will display an edit option - just click that and you can then add any extra information. 😉
Hello again Vjmac. So...I see Sleepybunny has left links about nitrous oxide and PA in children, so I won't leave those here.
So, just a few thIngs to add in addition to my earlier reply:
Just wondering if your son had the B12 spray before the above serum B12 test? All the guidelines state that no supplements (oral, or otherwise) should be taken before all investigations are completed. Taking supplements can skew blood test results and make it extremely difficult to get a diagnosis of B12 deficency / PA.
I note that your children have been referred to a haematologist - hope this is a paediatric haematologist. Might be a good idea to check, and if not, ask ask your GP to ensure that you are referred to a paediatric haematologist.
And just so you are aware, treating children for an undiagnosed medical condition can potentially cause all sorts of problems for parents. Some parents have experienced real problems with the authorities (medical and social services) because they a) continued to insist that their children had a problem with B12 deficency and b) commenced treatment for an undiagnosed medical condition. Terrible.
Here's a recent blog written by Martyn Hooper about these issues (together with the problems associated with getting a diagnosis and treatment for children with PA):
As Martyn's blog demonstrates, there are very real problems with getting children appropriately diagnosed and treated for B12 deficency (as you're probably acutely aware).
I think the very best thing I can do here is to urge you to join the PAS and contact Martyn Hooper to discuss your concerns. He will be able to offer more advice and support than is available through the forum (as I said above). And he will certainly be able to act as an advocate on you and your childrens' behalf, if this becomes necessary. If you telephone the PAS helpline you may get through to an answer machine. If you leave a message and you number Martyn will get back to you - he always returns calls - though this may take a couple of days if he happens to be out of the office.
In the meantime, I'm going to leave you more links to information about B12 deficency, just in case there's something there you haven't come across before.
It looks like a lot of links but most of the documents are only one page long - and they're certainly worth a read...illuminating. The links are annotated so you'll be able to spot what's immediately relevant to you. Just a note of caution...where the guidelines and information speak to treatment regimes and serum B12 levels, they're almost always referring to adult regimes and ranges - these may differ for children.
Anyway Vjmac, I really hope that things start to move in the right direction for you and your children. Please do post again of you need anymore information or support...and let us know how you get on.
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
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