supplements.

I would like to supplement my child with some B12 preferably patches and pref meth. Any advise. I did get him some lozenges but he used them to train the dog. I dont think the dog will eat a patch.

[Foggyme Administrator]

Hi Mandyjane. Please can you say a little more about why you think your child needs B12 supplements.

Has he had his serum B12 levels tested? Do you suspect he may have PA? Is there a history of PA or autoimmune conditions in the family?

If you could provide more information, it would be easier for forum users to provide appropriate advice.

Please be aware that if you supplement with any form of B12 prior to appropriate testing taking place, this will skew any blood test results (potentially for many months) and make it extremely difficult to get any kind of diagnosis and hence appropriate treatment.

If you take a look at the PAS pinned posts to the right of this page (or at the bottom if using a phone) there's lots of information about B12 deficiency and PA, including a B12 deficency symptom checklist.

Folks here will be able to leave better responses if you can give a little more information.

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[Hidden in reply to Foggyme]

Thanks Foggy. My child is becoming very tired and withdrawn. He is getting distressed and panicked by load noises. He has headaches. His legs hurt and today he said his hands had gone weak. His legs have hurt since he started walking 7 years ago. He was unable to feed after birth and was a quiet baby. prior to his birth I had quite a few doses of nitrous oxide (gs and air) not during the birth but on several occasions in the months prior.

he has dyspraxia and his memory seem to be getting worse. He cannot hear what I say and I have to talk very quietly. He can no longer follow instuctions and is having lots of emotional outburts. He is getting worse.

he will not be having any more blood tests for a long time following the last blood taking event. He needs some treatment for needle phobia and his mum now has mild ptsd following it.

[Foggyme Administrator in reply to Hidden]

Hi Mandyjane. Oh dear, there seems to be a lot going on here.

Have to say though that the symptoms you describe can be caused by many things other than B12 deficency.

With all the symptoms he is experiencing I would seriously urge you to work with your GP on this...it sounds as if he needs further investigations to get to the bottom of what's going on.

Most certainly, I would not advise giving B12 supplements to a child unless other conditions have been ruled out or he is proven to be B12 deficient (your GP should assess the clinical picture not just serum B12 levels). It might also be worth asking your GP to test MMA and homocysteine levels - these can often clarify if there is doubt about B12 deficiency).

The danger is that if you just assume that his symptoms are due to B12 deficiency, other potential underlying causes will remain undiagnosed and untreated, and his symptoms will continue.

Good luck with whatever you decide to do.

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P.s. There are strategies that a good GP or paediatrician can employ to take blood from a child who has a problem with needles - perhaps even mild sedation - so that all necessary bloods can be taken at the same time 😉

[Hidden in reply to Foggyme]

Thank Foggy

His NHS paediatrcian can find nothing wrong. I did ask for asssessment for autism a while ago but pulled out for several reasons one being that I suspect something physical and systemic going on, that might go undiagnosed as masked by autism label. My faith in medical profession at an all time low and all we have been offered in terms of a blood taking service is a disgrace. However my boy will be seeing another paediatrician soon whom I feel with will be better and more able to think in terms of systemic illness than most doctors as trained in enviremental medicine. I am worried about the cost. The consultations dont cost much but I imagine subsequent treatment might be.

He is not having any more blood tests for now. I tried to get the pead to do lots at once so that he would not have to go back several times. I never had one blood test as a child and I am sick of doctors and thier biological markers whcih for the most part seem to just be an excuse not to treat sick people. I diagnosed my mother with cancer four months before her GP, when I phoned him he said 'blood are fine' I said they might be but my mother isnt she has cancer. He said 'I can assure your there is nothing seriously wrong with your mother'. I diagnosed myself with a thyroid condition 30 years ago but was persauded otherwise by a Dr and a silly blood test and the worst experiance of my nursing career was having to sit with a man whlle he bled to death over a couple of hours, not able to get him any help with a doctor refusing to attend as his bloods had been Ok the previous day. The medical profession have thrown all common sense and all of thier clinical skills out of the window on the basis of blood tests and I am not pushing for any more for my child. If my child did have something serious wrong with him the last people to find out will probably be his doctors.

I cant see that giving him B12 can harm him and if it does not help I can rule out this as a cause.It would be in my opinion a more reliable test to do that, than rule it out on the basis on more blood.

Blood test are in my mind a way to kill us all off by convincing us nothing is wrong. It is NHS rationing of treatment and gives a nice profit to drug companys who get to provide drugs for all out symptoms as we slowly die. I dont trust any blood test. There I do get on my soap box in the night and need to go to bed..

Thank you for your reply Foggy and sorry if I have been argumentative. I can see you rational but I am going to head to amazon for some patches so I can see if any improvement over the next week before he gets to see private paediatrician.

[Foggyme Administrator in reply to Hidden]

Hi Mandyjane

'I cant see that giving him B12 can harm him and if it does not help I can rule out this as a cause.It would be in my opinion a more reliable test to do that, than rule it out on the basis on more blood.'

Just a couple of things about the above...

1) Not everybody with a B12 deficency responds to treatment from B12 patches, sublinguals, or nasal spray. Not responding to these cannot rule out the presence of B12 deficiency.

2) There are certain medical conditions where B12 supplements have to be used with care.

3) As you suspect the presence of B12 deficency, your new paediatrician should want to test methylmelonic acid (MMA). Raised levels will confirm the presence of B12 deficency (but note, can also be caused by other things). MMA levels can be tested via a 24 hour urine collection, so would avoid the need for a blood test. If your paediatrician does not suggest this test, ask for it 😉.

I would strongly urge you not to supplement with B12 prior to the next appointment with your new paediatrician. Once B12 is given, raised MMA levels drop to normal very quickly, and the opportunity to diagnose a potential B12 deficeny will be lost. And once a normal MMA test has been returned, you'd really struggle to get anyone else to consider B12 deficeny as a possible diagnosis for your son's symptoms, even if that's what he does have.

Another reason for caution - the PAS does hear of parents who have encountered severe difficulties with health and social services after treating their children for B12 deficiency when it's an undiagnosed medical condition (which is essentially what you would be doing).

It really would be far better to see the paediatrician so that tests, investigations and examination can take place first. And B12 deficiency could be diagnosed without the need for intrusive blood tests.

Sincerely hope that all goes well with your new paediatrician and that you manage to find some solutions for your son's health problems.

Good luck. Be really interested to hear how you get on.

👍

[Hidden]

Thanks foggy. I will take your advice and wait to see this new doctor. I have just had to fill out a very lengthy form in readyness and you are right would be better to wait for advice. He has a lot of funny symptoms and some are the same as symtoms I have. One symptom I have had since age fifteen is finding standing still very distressing. A couple of weeks ago I noticed him getting all upset as he had to stand for a bit. While filling out the form I asked him to stand on the spot to see how long he could do it. After less than a minute he was saying I cant stand for long you know as my legs feel weird. He was laughing about it but couldnt do 2 mins. I dot know any one else who gets this other than myself and Perran. .Is it be 12. People have suggested restless legs to me but it only happens when standing still and nobody else seem to get it like that.

[Foggyme Administrator in reply to Hidden]

Hi Mandyjane. Really pleased that you're going to hold-back on the B12 supplements. It really will give the best possible chance of finding out whether B12 deficency is a problem - or part of the problem.

About the leg 'thing'...bit difficult to say from your description. Losing balance or so called 'wall-bumping', not being able to stand on one leg with eyes closed, and generalised muscle weakness and exhaustion are all potential symtpoms of B12 deficiency.

Here are some of the more common symptoms of B12 deficiency, but it does effect everybody differently and there are many other symtpoms that may. It,appear on this list:

pernicious-anaemia-society....

Check out B12deficiency.info and B12d.org for more symptom lists (they all differ slightly).

I get what I call 'cotton wool' legs - legs that feel rubbery and as if they don't quite belong to me - but not sure if this is due to B12 deficiency or another underlying autoimmune condition that I have (I suspect the latter). And not sure if this is quite what you mean 😉.

Doesn't sound like restless leg syndrome - but I could be wrong.

It would be a good idea to make a list of all your son's symtpoms and hand this to the paediatrician.

Another thought - might be a good idea to ask the paediatrician to test for PA (an autoimmune disease that causes B12 deficiency - ask for IF antibody test) and also ask for full antibody screening to rule out (or in) other underlying autoimmune conditions (especially important if anybody in your family has any autoimmune condition, since these can (but not always) run in families.

this must be a very worrying time for you and I wish you both the very best of luck. Be interested to hear how you get on.

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