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child with dyslexia

Murfie276 profile image
12 Replies

My daughter has recently been diagnosed with dyslexic tendencies. She is almost 7yrs old in year 2 of primary school.

I had her B12 tested last year due to recurrent mouth ulcers.

I’m just concerned that while displaying the characteristics of dyslexia in reading & writing etc she does not experience the classic symptoms - blurred vision, words moving, headaches. It’s more her comprehension of what she’s reading. She gets 10/10 on her spellings most weeks.

I, her aunt and nephew all of PA although I am negative for intrinsic factor antibodies.

Could her symptoms be early PA?

Her antibody screen was negative.

Any advice appreciated.

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Murfie276
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12 Replies
pennyannie profile image
pennyannie

Hello Murfie :

I'm actually from the Thyroid Uk forum - but your post just jumped out at me.

I was undiagnosed hypothyroid and dyslexic from a child back in the early 1950s when it probably wasn't even understood or talked about.

I was good at maths and would excel at spelling as my issues were also one of comprehension.

My hair fell out due to all the stress when I took the 11 + as I couldn't comprehend the written questions - all my teachers seemed surprised - but I couldn't find the right words to tell them and as my hair fell out at around the same time everyone thought my walking round with iodine patches covering half my head the reason for all this upset.

Suggest you have your daughter's thyroid tested - you'll need at least TSH, Free T3 and Free T4 reading and range and if your doctor unable to run the tests we now use Private blood test companies as listed on the Thyroid Uk website thyroiduk.org -

Sleepybunny profile image
Sleepybunny

Hi,

If you suspect she may be showing signs of PA/B12 deficiency, I suggest joining and seeking support from PAS.

Parents of children with suspected PA/B12D aren't always listened to with respect.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

PAS members can ring helpline.

PAS membership is separate to membership of this forum. Parents can join on behalf of children.

You do not need a PA diagnosis to join.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

There are articles about juvenile PA on the PAS website. See second page of leaflets list.

pernicious-anaemia-society....

"I, her aunt and nephew all of PA although I am negative for intrinsic factor antibodies.

Could her symptoms be early PA?

Her antibody screen was negative."

About half of people with PA, test negative on IFA (Intrinsic Factor Antibody) test.

If you have time, look for this document "NICE CKS Anaemia - B12 and Folate deficiency" and read the Background Information section on PA.

This flowchart aimed at adult patients mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

B12info.com has lots of useful advice.

b12info.com/

May be worth putting concerns in a letter. Worth mentioning family history of PA and that all had negative results in IFA test.

b12info.com/writing-to-your...

From personal experience, I know it's possible to have severe B12 deficiency symptoms with normal range serum B12.

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

NICE (National Institute of Health and Care excellence) recently published new B12 deficiency guidelines for over 16s.

nice.org.uk/guidance/ng239

The guideline uses the term Auto-immune Gastritis rather than PA.

One of the negative comments about this guideline was that it didn't cover children. It may still have info useful to point out to GP though. See PAS and B12info.com comments about the new guideline below - children are mentioned.

pernicious-anaemia-society....

b12info.com/first-nice-guid...

As far as I know there is no UK national guidance on PA or B12 deficiency in children which to me is a shocking oversight.

I only found these articles.

BNFC (British National Formulary for Children) hydroxocobalamin

bnfc.nice.org.uk/drugs/hydr...

Next one mentions megaloblastic anaemia. This is a type of anaemia where red blood cells are enlarged and it can be associated with B12 deficiency and Folate deficiency.

bnfc.nice.org.uk/treatment-...

You could search online for the local B12 deficiency guidelines used by your ICBs (Integrated Care Board) in England (Health Board in Wales/Scotland). It's possible that ICB may have a separate B12 deficiency guidelines for children. Also worth searching for local guidelines on treating macrocytic or megaloblastic anaemia.

Links about B12 deficiency in children

b12info.com/children/

Next article is from a Dutch B12 website.

stichtingb12tekort.nl/engli...

B12info.com has blog posts that mention children.

Some posts may have details that could be upsetting to read.

b12info.com/category/children/

There are other parents who have posted about their children and young people with B12 deficiency.

It may be worth searching forum posts with term "children" or "parents".

Just curious as to whether any of you have been tested for coeliac disease, another auto-immune condition that can lead to B12 deficiency.

NICE guidelines Coeliac disease suggest anyone with unexplained b12, folate or iron deficiency should be tested.

Coeliac disease and children

coeliac.org.uk/is-it-coelia...

Coeliac UK article about diagnosis of coeliac disease.

coeliac.org.uk/information-...

I'm struggling to read her results due to small print.

B12 deficiency (and Folate deficiency) can lead to red blood cells that are larger than normal (macrocytosis).

Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).

If a person has both B12 deficiency (and/or folate deficiency) with iron deficiency, they may appear to have normal sized red blood cells on Full Blood Count (FBC).

A MCV result that is below range might mean that there are red blood cells that are smaller than normal.

A MCH result that is above normal range might mean that there are red blood cells that are larger than normal.

A low red blood cell count might mean anaemia is present.

If I've read it correctly, your daughter's result for red blood cell count is only just within normal range.

Full Blood Count article

labtestsonline.org.uk/tests...

Has she had a blood film test (also known as blood smear)?

Might be worth comparing this set of blood results with older results to see what's changed over time.

I'm not a health professional.

BeachArt profile image
BeachArt

I am not an expert on these things but it appears to me that she has low normal ferritin and low haematocrit, which both indicate iron deficiency anaemia. And also above range MCH & MCHC which indicate macrocytic anaemia, of which B12 deficiency is the most common cause. I would ask for further testing, and a blood film test. Like I said, I'm not an expert, but there are many on here who will be able to advise you further. Good luck x

Showgem profile image
Showgem

I am no expert but I think the results may point to both b12 and iron deficiency. These may be diet related and if so supplements may help or she may have a problem with absorption which could be PA.

Gen89 profile image
Gen89

my son is dyslexic and I first suspected at primary school but it wasn’t until he had a full pre university assessment that I realised how much it affected him despite not having the traditional symptoms you mention. Just as common are slow reading, slow writing speeds and in particular the ability to read and understand what a question is actually asking. He was excellent at spelling tests but this didn’t translate into good spelling in his writing at primary school and he also missed out words as he wrote although he thought he had written them. Despite all this he achieved excellent GCSEs, Alevels and university degree. I always tried to install the attitude that if you have a problem the world isn’t going to make excuses for you, you just have to work that bit harder. Having said all this I wouldn’t label her dyslexic as yet. Children develop at different speeds. Schools do seem to overdiagnose dyslexia these days. But it’s well worth the proper reassessment pre gcse years as the extra time in exams made a big difference .

Rainbow-Lover profile image
Rainbow-Lover in reply to Gen89

What an excellent reply.

As a retired Head of a Primary School, I had many conversations with parents on this subject.

Schools do over diagnose dyslexia mainly because they are pressurised to do so by anxious parents.

Gen89 profile image
Gen89 in reply to Rainbow-Lover

Thank you 😊

Sleepybunny profile image
Sleepybunny

Might be worth searching for this NICE document.

NICE CKS Anaemia - Iron deficiency

I think it mentions children.

Non-anaemic Iron Deficiency article

Aimed at doctors so may have details that could be upsetting.

Mentions children.

patient.info/doctor/non-ana...

Worth checking to see if your ICB has guidelines for iron deficiency/iron deficiency anaemia in children.

These two books mention children with B12 deficiency.

Published a few years ago so some bits may need updating.

Some case histories may be upsetting to read.

Could It Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and J.J. Stuart (US authors).

Very comprehensive. Lots of case histories.

What You need to Know about Pernicious Anaemia and Vitamin B12 deficiency

by Martyn Hooper, former chair of PAS (Pernicious Anaemia Society)

Have you looked at symptoms lists for B12 deficiency?

It can lead to many different neurological symptoms.

I struggled with understanding complex stories eg being unable to follow the plot and I think this has been mentioned by other forum members besides me. Many report confusion and forgetfulness, brain fog and there are many other possible symptoms besides these.

Symptoms lists

b12info.com/signs-and-sympt...

pernicious-anaemia-society....

Next list is from US website

b12awareness.org/cobalamin-...

Next list is from Dutch website

b12-institute.nl/en/symptom...

Clematisa1 profile image
Clematisa1

I am a retired teacher and was interested to see that your daughter manages 10/10 in spelling most weeks... I'd have thought that a bit unusual for someone with Dyslexia so I'd be checking other things too. Is she organised at home eg her room, her school things her school bag etc.. being retired I'm not up to speed with the latest on Dyslexia but my nephew had special glasses and other classroom assistance in school for his dyslexia... bdadyslexia.org.uk/ and bdadyslexia.org.uk/search?q...

B12life profile image
B12life

I agree with showgem

Murfie276 profile image
Murfie276

Thank you everyone for your replies.

My daughter has Irlens syndrome, dyslexia and B12 deficiency. Worth seeing a specialist optician too. Hope it helps.

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