Pernicious Anaemia Society
14,603 members10,407 posts

I need help for my daughter

I have pa myself and struggled for 2 years and still am . No one seems to understand !i have noticed a decline in her health in the last couple of months . Run down tired very emotional seems unable to handle stress at all most recently mouth ulcers. I took her to my doctor last week and asked for all bloods to be done as i have noticed such a change in her . She is only 12 . My heart is breaking for her . I have a follow up app on Friday of this week due to Easter holidays. What can I do in the meantime to help her .i just about to start self injections myself .

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Wait for the results. She is of an age where her hormones are more than likely running riot as well which could be affecting her mood.

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Thank you it's not easy x

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Hi,

I am not medically trained.

What does GP/dentist think is causing mouth ulcers?

1) I would suggest joining PAS if not already a member. They can be source of support and info on PA.

Sometimes the concerns of parents about possibility of PA in children can be misunderstood which is why I suggest joining and talking to PAS before tackling GPs/specialists.

Blog post from Martyn Hooper's blog about Parents and PA

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

2) May be a good idea to get copies of all her blood test results. I was told more than once that everything was "normal" and when I got copies I found abnormal and borderline results.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

Bear in mind that in UK, the reference ranges for children may be different to range for adults. Age at which children use the adult ref range can vary according to which test is looked at.

If you're in UK, may be possible to locate children's (paediatric) ref ranges for each blood test by

1) Internet search

2) Search on local NHS website

3) FOI (Freedom of Information) request submitted to local NHS website.

If unable to locate them , local MP may be able to help.

Coeliac Disease

If blood results show B12 deficiency or folate deficiency or iron deficiency, NICE guidelines on Coeliac disease (UK) suggest testing for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

coeliac.org.uk/coeliac-dise...

Do you know what blood tests have been ordered for your daughter?

Link about What to Do Next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK but have members from around the world

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Following books have case histories featuring children/teenagers/young adults

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"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 above book called "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Links about PA and B12 deficiency in children/teenagers/young adults

b12deficiency.info/children...

Person who runs above website can be contacted by e-mail. Details on website.

PA in children

pernicious-anaemia-society....

Link about writing letters to GP about b12

Point 5 is about being symptomatic with an in range B12 result.

b12deficiency.info/b12-writ...

Health Professionals PAS membership

They can join PAS as associate members for free. There is a section for health professionals on PAS website .

pernicious-anaemia-society....

PAS article on Juvenile PA, only available to PAS members.

pernicious-anaemia-society....

UK B12 documents

If in UK, I recommend reading all these. Think BSH Cobalamin and Folate Guidelines mentions children.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

HDA patient care trust has helped children. HDA pct are likely to need a full medical history and are normally quick to respond to enquiries.

HDA patient care trust tel no. 0207 935 8366

I hope you are able to get help for your daughter.

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Thank you so much . I will read all the info you have given me x

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Tell her she will likely improve quickly with B12. Ideally wait for the result first, because if it is low, the doctor should test for intrinsic factor antibodies which can show B12 malabsorption.

Ask the GP reception for a print-out of her results which you are entitled to by law.

Applying honey to mouth ulcers can help according to Dr.Greger's info, and also avoiding dairy. google.co.uk/search?q=dr+gr...

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