Pernicious Anaemia Society

My 11 year Old Daughter Struggling With Iron Deficiency Anemia

My 11 year old daughter (12 in a few weeks) She was diagnosed back in August. I knew something wasn't right as she had been having many symptoms for some time. Symptoms were dizziness, extreme tiredness, constant mouth ulcers, cold hands and feet and generally just unhappy. My daughter has been on Ferrous Sulphate twice a day since diagnosis. She has been taking them well and had no side effects. However I feel the symptoms have not eased off at all and if not worse. The only symptom that has eased off is the dizziness that is much better. She still has constant mouth ulcers that effect her eating, so tired and miserable all the time and always complaining she is cold. The doctor has sent her for more blood test next week when I took her back to see him with my concerns of the symptoms not easing off!

I am trying so hard to be positive about all this around my daughter but am starting to feel it's dragging me down. My daughter is a lovely caring girl and gives me no trouble at all but it upsets me so much to see her this way. As soon as I open the door to her when she comes home from school she is complaining how cold and tired she is. She then gets undressed and just wants to lie on her bed all night. I totally understand how this must be making her feel unhappy to be so tired and feeling cold all the time. Sometimes I can handle it and try to be positive and other days it just gets to me.

I am wondering if my daughter is not absorbing the iron or unable to store it. She takes the iron tablets with orange juice as I've read this helps to absorb the iron. I have also heard from many other people on talking about this that they had this condition as a child or some have it now and can last for some years. That only worries me more to think my daughter could be feeling this way for some time yet.

Any advice would be much appreciated.

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Hi egardiner that is very distressing to read about your daughter.

Do you know whether the blood tests scheduled to be taken include Vitamins B12 and Folate as these two help iron make red blood cells and to function properly in the body? The three need to be kept in balance.

We can only source B12 naturally by eating red meats, fish, seafood, eggs, poultry and dairy produce. Is you daughter able to eat plenty of those?

For Folate she needs to eat plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach (good for iron too) peas, beans etc.

Please ask your daughter's doctor to check her B12 and Folate levels if for nothing else but to rule out their deficiencies as a cause of her symptoms as anyone at any age can be at risk of developing them for many and various reasons.

I am not a medically trained person but have had Pernicious Anaemia (a form of B12 deficiency) for 46 years.

I wish you both well.

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Hi Clivealive thank you for your reply. My daughter is not the best with her eating habits and can be very fussy. However she does eat fruit, veg, will only eat very small amounts of red meat and will only eat battered cod. She will eat scrambled egg. Unfortunately she will not eat green leafy veg kale, spinach etc. I have tried her with these but she won't even try them, she is really not good on trying anything new.

I'm not sure what blood checks the doctor has requested as I just assumed it for iron levels. I do have the blood test sheet that the doctor has give me to take along to hand over when she has her blood test done. Not sure I will understand what's on there but will have a check.

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The orange juice should help the iron to be absorbed. You may find a mixture of citric acid (as found in orange juice) and ascorbic acid (vitamin C) does a better job. I used to take my iron sulfate with Tesco effervescent vitamin C tablets.

It can take quite a while for the body to make a new set of red blood cells, so improvement from symptoms can take a few months.

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Hi,

Just to say that I'm not medically trained just someone who has struggled to get a diagnosis.

I learnt from experience to always get copies of blood tests for myself and my family. I learnt this after being told everything was fine/normal and then finding abnormal/borderline results on the copies.

The reference ranges on blood tests for children are sometimes different than those of adults.

Access to Medical Records (England)

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

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

nhs.uk/chq/Pages/2635.aspx?...

clivealive mentioned folate and ferritin tests. Has your daughter had a full blood count (FBC)?

Links about blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

labtestsonline.org.uk/under...

Are there any auto-immune conditions in the family?

Has she been tested for Coeliac disease?

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

See section 1.1.1 which mentions Coeliac tests for people with recurring mouth ulcers.

NICE guidelines on Coeliac disease recommend two tests tTg IgA and total IgA test. My experience is that GPs don't always order the total IgA test so watch out for this if Coeliac tests are ordered.

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

Thyroid Disease

nhs.uk/Conditions/Thyroid-u...

thyroiduk.org/index.html

Have any thyroid tests been done? There is a very active Thyroid UK forum on HU.

Symptoms of B12 deficiency

pernicious-anaemia-society.... See PDF Checklist on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

B12 websites (UK based)

b12d.org/

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

b12deficiency.info/

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

There is a paediatric version of above book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know"

Link about B12 deficiency in children

b12deficiency.info/children...

If you are concerned about the possibility of B12 deficiency I'd suggest talking to PAS (Pernicious Anaemia Society).

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The anaemia in the title of this forum is a bit of a misnomer. Pernicious Anaemia is an an autoimmune response that attacks the mechanism that allows B12 to be absorbed leading to a B12 defciency. It can also affect the absroption of other vitamins and minerals including folate and iron.

The anaemia caused by iron deficiency tends to make red blood cells smaller - the anaemia caused by B12 (and folate deficiencies) tends to make red blood cells larger and rounder - it is possible to have both going on at the same time and quite possible for iron deficiency to mask the effects of B12 and folate deficiency.

There is considerable overlap between the symptoms of iron deficiency, B12 and folate deficiency and a number of other conditions.

Suggest you ask for copies of the blood test and if B12 and folate weren't done asking for them to be done - explaining to your GP that things don't seem to be improving and that some things seem to be getting worse so you think there may be something else going on.

If they were done then post we will try to review them with you to see if folate and B12 are likely complications if you post them on here (with ranges).

symptoms of B12 deficiency are here

pernicious-anaemia-society....

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on folate - many foods are fortified with folate - such as breakfast cereals so it might be worth looking at this and trying to get enough folate etc into your daughters diet that way.

It is quite difficult dealing with a child that is a fussy eater - not sure if there is a forum on here to support it - probably ought to be if there isn't already :). My brother was a very fussy eater and had very low calcium when he was small - mum had to bribe him with shortbread to get him to drink milk. My niece was similar and it was a constant battle for my sister-in-law to get her to eat enough - think she got most of her calories from chocolate. Both are much better eaters now.

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Thanks for your reply and all the info. I'm not sure what blood counts my doctor has requested, I have the sheet to take along when we get bloods done. I will check it out, is it easy to understand on there?

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Has your daughter started her periods yet? Iron deficiency anemia can cause heavy periods, then of course, deplete iron stores again in the next cycle. It's like a vicious circle. Just thinking about my daughter, this was her problem, always anaemic.

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if you get your results printed out then you can post them on here...as a new post so you get more replieso (block out personal details) the lovely people of this group will help you read the results as they did with me. i feel your pain ..... im 23 and my mum is looking after me and she gets frustrated and upset seeing me so sick too. I know it's difficult. I really hope your daughter gets the help she needs x

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I'm so sorry to hear that your daughteris having such a hard time. I have had celiac disease for many years it is very difficult on me and my family. She is very young to be having all these malabsorption problems for just no reason she definitely needs to see a gastrointestinal doctor. For me when my intestinal tract is not absorbing no amount of iron supplements help me and I recieve infusions. These are life changing for me I go from miserable unable to get up to actually functioning again. I have been able to heal my stomach quite a bit using the GAPS diet and full time paleo. The soups and broths of the gaps diet are very nourishing and make me feel much better without causing stomach distress. There is so much info about this online for free I also did read the book and work with a practitioner it was truly a life saver for me as I had spent 2 years bed bound. I hope you find some answers soon you and your daughter are in my thoughts please keep us posted of your progress.

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Hi all, Sorry I haven't been able to post my daughters blood test results on here, I'm useless with technology and haven't got a clue how to do it!

Just to update you all with my daughter. Today she had an appointment at the dental hospital to have her sore mouth checked out! mouth ulcers and swelling within the mouth. It turns out that she has a condition called Orofacial Granulomatosis. (OFG) basically swelling of the inner mouth. Can be caused by an allergy to certain foods or additives. Also similar swelling with Crohn's disease. So she has got to cut out an awful lot of certain foods to see if her mouth improves after Several weeks. She has also got to have more blood test to rule ot crohn.s. Feeling worried in case it Crohn's but need to be positive around my daughter

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