son 13 diagnosed with pa

[Lisagt4]

hi thank you for accepting me, my son was diagnosed with pa and we are waiting test to see if there is an underlying cause. my question is can pa cause depression in children or is it just an age thing.

[clivealive Forum Support]

Hi Lisagt4 I'm not medically trained but having had P.A. for 45 years I would say that the effects of having P.A. may well cause depression rather than be the cause of it.

Is there a family history of P.A? - it can be inherited

Do you know yet what treatment your son is going to have?

Please be assured that there is life after P.A. as I'm still "clivealive" at 75

Come back here if you have any more questions as there are others who will be able to give you good advice.

I wish your son well.

[Lisagt4 in reply to clivealive]

hi thank you we are waiting for hospital to send letter to the doctors so we can get the injections started asap

[Gambit62 Administrator]

I was finally diagnosed as having a B12 absorption problem in my late 40s - i'd suffered from periodic anxiety and depression for almost as long as I can remember - it took a few years for me to figure out what levels of B12 I now needed and to get there and having had the mood problems for so long I really didn't think they were connected so I was a bit surprised when I realised that they had gone.

Hope that your son feels better soon.

[Lisagt4 in reply to Gambit62]

thank you he just seems stressed all the time unless he is at home with me and no school lol.

[Sleepybunny]

Hi,

Have you considered joining PAS (Pernicious Anaemia Society)? Joining this forum is not the same as joining PAS.

pernicious-anaemia-society....

PAS tel no [phone]

The PAS has members from around the world, of all ages from toddlers to 80 years plus. They have some local support groups in UK and two in USA.

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog, about young people with PA. Martyn is the chair of the PAS.

martynhooper.com/2016/08/19...

martynhooper.com/2015/02/10...

Have you read the following books?

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

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This one has several case studies including some young people.

"Could it Be B12" by Sally Pacholok and JJ. Stuart. This has lots of case studies including young people.

Case studies from B12 Deficiency info website. lots of other B12 info and interesting blog on website.

b12deficiency.info/case-stu...

Are you In UK?

There are various UK B12 documents/articles that may be of interest to you if in UK.

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) Pinned posts on this forum. If you're in UK, I'd recommmend reading fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post.

4) BNF Chapter 9 Section 1.2

Link gives info on B12 treatment in UK.

evidence.nhs.uk/formulary/b...

A lot of people on forum struggle to get adequate treatment for B12 deficiency with neuro symptoms. In UK, B12 treatment is more intensive for patients who have nuero symptoms.

Who gets PA?

pernicious-anaemia-society....

I am not a medic just a person who has struggled to get a diagnosis.

Blood Tests

The most important thing I learned to do in years of trying to find out what was wrong was to always get copies of all my blood tests. I learnt to do this after being told everything was fine /normal and then finding abnormal or borderline results on copies.

In relation to B12. I look at B12, folate, ferritin and full blood count.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

UK Medical Records

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

Some people on forum who have been diagnosed with PA in past, have in later life had B12 injections stopped and were unable to prove that they had had a diagnosis of PA.

"we are waiting for hospital to send letter to the doctors "

Can you get a copy of this letter as I assume it will contain proof that he has been diagnosed with PA?

[Lisagt4 in reply to Sleepybunny]

thank there a lot to look at there, I shall work my way through it .

[Foggyme Administrator]

Hi Lisagt4. I'm so sorry that your son has been diagnosed with PA. it must have been quite a shock for you. But the good news is that with a firm diagnosis in place, he is more likely to get the treatment that he needs.

About the depression - as other have said, depression and mood swings are a common symptom of B12 deficency.

Another is the desire for quiet, away from bright lights, noise, and crowded environments. Perhaps this is the reason why your son would sooner stay at home with mum rather than go to school?

I know before I was first diagnosed I became withdrawn, didn't like to go out, and stopped having any kind of social life (not like me at all). I found that noise was painful in a way I couldn't begin to describe - and it was if all my senses were being bombarded with information that my brain just could not process. Goodness only knows how a child would be able to make sense of all this, much less be able,to explain it to anybody else.

So...whilst he may have depressing and mood swings, it's likely that other symtpoms may be having an impact to.

These kind of symptoms are called neurological symtpoms and when these are present, a more intensive regime of B12 injections is needed - all the guidelines state this. This treatment regime is 6 x loading doses on alternate days and then an injection every other day until no further improvement (for some people, this can take many months). I'm mentioning so that you can ensure that your son gets the right treatment - many GP's have never heard of this neurological regime so it might be something you will need to raise and discuss with your GP.

Also - it's often quite difficult to get information out of children about how they're feeling, especially a 13 year old boy (I'm a mum, I know). It's quite important to know which of your son's symptoms are resolving and which remain, since the only way of tracking the effectiveness of treatment is by symptoms relief (some GP's think they can do this by looking at serum B12 levels once treatment has started - but that's not true, in fact it's quite wrong, and potential harmful. Might be a good idea to make a list of your son's symptoms and get him to play the symptom ticking game - so he can see for himself what's changing - and help,you to monitor his symptoms.

Many GP's are not well-informed about PA and the treatment of the B12 deficieny it causes so people here find that becoming knowledgable about the condition is the best to help their GP's to help them (GP's often have some very odd notions about B12 deficency and it treatment and sometimes it's very helpful to have some myth busting knowledge up,your sleeve - just in case 😄).

I see that Sleepybunny has left you lots of links to information and guidelines. I'm going to you some more (sorry, there might be duplications - no time to collate and check). I'm leaving these links because they contain some brief annotations which will tell you what information the documents contain - useful if you want a specific piece of information quickly. (There's a symptoms checklist for you to check against your son's symptoms. You can also find another (more extensive) symptom checklist at b12deficency.info - worth having a look at that too.

So...finally...good luck with your GP...really hope all goes well. If things don't go how you think they should (in particular, the B12 regime for neurological symtpoms) then please post again and we can give more focused advice on how to get this treatment. Lots of lovely people here to pop in and offer advice and support whenever you need it.

Take care both....here's the links...oh and they won't copy and paste....will add them in another reply in a couple of seconds....

👍

[Lisagt4 in reply to Foggyme]

thank you I'm going to showmy son this in a bit and see what he says .

[Foggyme Administrator]

And here's the links (note - also one relating to B12 deficency in children - at the bottom, I think:

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

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)

stichtingb12tekort.nl/weten... (B12 Deficiency in Children)

[Sleepybunny]

Hi,

another link about children and B12 deficiency

b12deficiency.info/children...

[sirlam]

Hi. I am sure you must be wondering where to start! One quick thought - do read up on co-factors before your son starts his loading injections (including: iron, potassium, magnesium and folic acid) and Good luck!