Ds is anaemic again, who should monitor?

[claw2]

Ds has an extremely limited diet. He takes iron supplements, iron supplements stop once he isn't anaemic, he then becomes anaemic again.

At the moment it is left up to me to decide when I think he may be anaemic and request a blood test from my GP.

Should someone be monitoring, apart from me?

Polter, I have been googling and scaring myself to death as you do!

Apparently it is difficult and quite uncommon to be anaemic just due to poor diet (unless you literally eat nothing).

I do wonder if it has something to do with that too. When ds was born he had rhesus disease, which made him extremely jaundice, to the point of being placed in special care and requiring phototherapy 24/7 for about 2 weeks. Rhesus disease destroys red blood cells and causes jaundice and anaemia. I do wonder if it can do some damage which can affect you in later life too.

I must admit that I've hesitated to post this, because tone doesn't carry well over text, but tbh, the reason you may find it hard to get this dealt with is that it really doesn't cause too many problems in young growing children, even at quite a severe level. Unless the child is going into heart failure, or there is an acute problem which results in the anaemia, which must be dealt with, it tends to be very conservatively managed and it may be that a blood test is seen as more harm than the anaemia.

I know exactly what you mean Lougle, I cant win. CAMHS for example were questioning me when school said they had concerns about ds not eating and how pale he looked, why I didn't take him for a blood test. They looked horrified and as if I was medically neglecting him, when I told them I had suspected he was for a while, but hadn't taken him as it required a blood test and he was under enough stress already.

Me asking my GP for iron medication as a precaution, could probably also be seen as my asking for things which are not necessarily.

Has he had a coeliac test? Sounds very lie that to me ( two coeliac kids)

necessary not necessarily

If I don't take him for a blood test, his anaemia will go untreated. I could then be accused of medical neglect. If I do take him, then as you say it could be seen as more harm than anaemia.

(I will add I do not constantly take him for blood tests!) I have taken him for 2. Other times he was found to be anaemic at birth, again at 3 by Dietician. He has been severely anaemic each time (not sure about this time until Friday)

No follows up are ever done, he just takes medication for 3 months. I am starting to wonder if there is a time when he is not anaemic and perhaps he isn't absorbing iron effectively. He looks extremely pale all the time and his colour does not improve with medication.

No he hasn't Driven. It is just assumed by everyone (including me) that he is anaemic due to his diet.

What does the test involve?

It is a blood test initially. If you google search for the NICE guidelines on testing for coeliac disease in children I think you will find your DS fits a lot of the symptoms.

My DS1 was persistently anaemic which the paed put down to his incredibly limited diet. Also lethargic, exhausted etc. After a year and a half of this we happened to see a diff doctor who sent DS for coeliac test - bingo! 2 yrs later he is a different child - bursting with energy and a fantastic eater.

I think you should demand a test to at least rule it out. V important not to change his diet before test (ie don't reduce or cut out gluten) as that will cause a false negative.

The Coeliac UK website has a good page on diagnosis.

If he is coeliac then the recurrent anaemia is because eating gluten damages his small intestine so he can't absorb nutrients.

Thanks Driven, last blood test GP did not tell me that ds wasn't supposed to eat or drink before the blood test, so it may have to be done again as his glucose levels could not be tested. Although I was assured it wouldn't affect his iron levels. If test has to be done again, I will ask for further test.

I did google symptoms and failure to thrive seems to be one. Ds was born on 95th centile for both height and weight. Then gradually dropped to 75th, now just below 50th. No failure to thrive as such.

He does have a very poor appetite and would not eat at all, if I didn't give him food, he never asks for food.

He does have continence issues, which have been linked to his poor diet.

He suffers with high anxiety and low mood.

He is always full of energy, spinning around etc and doesn't seem to need much sleep. Although he does tire easily ie complains of pains in his legs etc.

Always complaining of headaches and feeling sick, particularly.

All of the above could be put down to other difficulties, such as sensory etc.

Failure to thrive is rare with coeliac. At diagnosis 50 percent are overweight. My DS was born on 50th percentile and had sunk below 25th at diagnosis. It wasn't considered an issue by anyone but me because still in normal range - but now he is gluten free he is back on 50th. There is a huge range in symptoms across individuals. Anyway glad you are checking it out as it is massively under diagnosed and life transforming when caught early.

I wont take it up with my GP, he doesn't even get the whole not eating thing or even autism. A dietician or similar might be a better person to discuss things with.

Thanks for bringing it to my attention. I feel sure there is more going on with ds, im just not sure what. If a conclusive test can be done, it will be worth ruling out.

I was told he would get some colour once he wasn't anaemic anymore. He never has, he really is extremely pale, everyone comments on it.

Ok, good luck. My DS1 is also extremely pale, even now the anaemia is gone. Don't let a GP or dietician suggest you 'try cutting out wheat/gluten and see if he improves' - do the blood test first. It's quick and easy and if you get a positive result then you know exactly what to do to get him well. I have a friend who has a probably coeliac child, but hasn't had her tested. She only does the gluten-free diet half-heartedly because 'it's difficult' - and the child's health will be really suffering as a result. It's only when you get the definitive diagnosis that you go the whole hog, according to research.

Thanks Driven, trying a wheat/gluten free diet would be extremely difficult, its in everything ds eats! But as you say if you know it is making your child ill, you have to go the whole hog.

My GP is very slap, dash and I don't think he would even know what a gluten free diet was (must think about changing GP too) He told me ds 'would grow out of autism'!