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?

[claw2]

Hi Polter and thanks for reply, no he doesn't drink a lot of milk (banana milkshake occasionally) and yep due to restricted diet, I think (it was last time).

I took him to my GP a few months ago and asked exactly that question (as I didn't want to put him through another blood test) could he just take lower does iron supplement, as I thought it would be logical, that he would end up anaemic again in a bid to be pro active! they prescribed Fersamal 5ml a day. I also asked for vitamin supplements. My GP told me to buy some vitamins over the counter!

Ds keeps complaining of feeling sick, headaches, aching painful legs, finding it exhausting walking up stairs for example in school, not being able to concentrate etc. He isn't eating at all in school. Despite being on the lower iron, when ds was sent home from school recently I took him to my GP and asked for a blood test. He is anaemic again, as I feared.

I have a dr's appointment on Friday to 'discuss' blood count and prescribe medication. I would like to ask for a referral and for someone to monitor the situation. I think its unfair for me to have to decide when I think he may/may not be anaemic. Just unsure of who to ask for referral to.

[lougle]

Unless it's severe or the cause is sinister, then it's a GP matter, Claw. Their advice to by some over the counter supplements is quite reasonable for mild-moderate anaemia.

What do you think should happen? I don't think it would be unreasonable for the plan to be that he takes supplements, weaning down as signs improve, then start again if signs of anaemia return.

[claw2]

GP prescribed the iron supplement Lougle, it was the vitamins he said to buy over the counter. Over the counter iron supplement contain such low doses of iron, they do not help if you are anaemic. Too much iron if you are not anaemic is dangerous and can cause damage to internal organs, hence very low dose of iron in over the counter supplements.

Ds has been taking prescribed iron supplements for 3 months and is still anaemic. Previously he was severely anaemic, no iron and very low reserve. Not sure just how anaemic he is this time around, until Friday.

Usually ds is found to be anaemic, takes prescribed supplements for 3 months, no follow up. I would assume routine 3 monthly follow up for first year might be a good idea. However my GP looks at me as if im mad and makes comments such as 'im sure he will grow out of it'.

Ds has reoccurring anaemia caused by his diet, so ideally some help with the cause, improving his diet, I suppose and for someone to acknowledge that it is affecting his health and that he needs help with it.

[claw2]

He saw a dietician when he was about 3 and discharged, they said not their remit, as there is nothing physically stopping him from eating. Dieticians just tend to tell you what a kid should be eating, they are a bit stuck on what to do if a kid wont eat.

[lougle]

What will he eat? What will he drink? How sensitive is he to drink flavour?

[claw2]

My GP doesn't seem to know where to refer ds to, which is why I usually have to be informed and ask for referrals.

Dietician might be a good starting point, as at least they should know where to refer to if they cant help.

Ds's diet is just so extreme, I shouldnt imagine he gets any goodness. His diet is slightly better at home, but still very restricted.

Ds did have some intervention from feeding clinic at his old school, however it was all counter productive as school didn't grasp the idea of the feeding plan and it failed. My GP doesn't grasp the whole eating thing either. When younger I think we must have gone full circle with referrals, however ds is now 10 and these were some time ago and im not happy for everyone to just give up on ds.

[claw2]

Daily diet consists of

breakfast - Cookie crisps, no milk (I can broaden this slightly to other sweet cereals)

Lunch - in school nothing to eat or drink (a few sips of water if lucky)
Lunch - at home, mini babybel cheese, dry bread (but not together, at separate times)

Dinner - 2 fish flippers (fish fingers shaped like a fish) chips

Snacks - salt and vinegar crisps, mini cheese, certain cakes and biscuits. Very occasionally raw carrot, peeled apple and grapes.

Drinks he will drink fresh apple juice, tropical fruit, blackcurrant. Water but in very small amounts. Occasionally banana milkshake.

He has tried other food ie a tiny little piece, but this tends to be to just please me and he never tries it again and it never becomes part of his diet.

I was thinking there must be a nutritional drink or something he could try. You know the kind they give to people who for whatever reason are not eating properly.

[claw2]

Drink flavour he really dislikes orange flavoured drinks. He can usually taste things added to drinks, although he is ok at taking tablets or sweet tasting medicines.

[lougle]

So his recommended intake is 8mg/day

The Cookie Crisps will give him 2.59mg of iron (30g serving)

Would he attempt orange juice? Vitamin C increases iron uptake.

[lougle]

x-post about the orange juice.

Tbh, most nutritional drinks taste fairly awful.

[claw2]

I would also like some advice on how I should be treating his anaemia. Things such as how often should I get it checked. How long does it take when not eating properly for iron levels and reserves to fall again etc, etc.

I don't know, some sort of plan rather than just leaving it up to me to monitor and decide when I think he needs a blood test.

Before when severely anaemic he showed no signs at all. What if I don't see the signs and it goes untreated. The feeling sick and headaches seems to be due to his eye disorder (which I have also asked for a referral) the painful legs when walking etc I put down to hypermobility, motor skills etc. Not being able to breathe, he has asthma. Although it might be due to being anaemic.

[claw2]

Bourbon biscuits and fairy cakes. He quite likes home made fairy cakes, I might get away with hiding something in there, but if he tastes it, it will put him off and he wont eat them again. It doesn't take much to turn him off foods.

He is fairly good with different types of bread ie crusty bread, pitta bread, etc. Variations in bread is quite successful! but no brown bread and no ketchup or sauces of any kind.

I think I would have more success of him accepting drinks, as long as he cannot taste what I have added.

[claw2]

Things rich in iron, which I can add to banana milkshakes or juice, might be an idea. Thanks Polter

[claw2]

I will be doing my shopping later, so any suggestions, more than welcome!

[claw2]

Polter, I usually have all the answers for ds, his eating totally stumps me!

Over the years we have the done the rounds starting with dietician, then feeding clinic and OT input, then CAMHS feeding clinic. With CAMHS concluding 'sometimes you just have to accept this is as good as it gets'. We have followed all the recommendations, his diet has improved slightly at home, but he still refuses to eat in school. Sometimes, when stressed he will refuse to eat breakfast before school, I do treat it as very matter of fact, but it is worrying.

Where can i buy Floradix? I will give it a try and do some tasting myself and see what it mixes better with. I have been reluctant to hide things, as it has resulted in ds never touching something again.

Ds loves McDonalds banana shakes and homemade fairy cakes so that should be doable!

He doesn't like Oreos unfortunately

[claw2]

It would be sensible to ask for referral to dietician and tell her/him of any planned additional iron, so any changes to medication can be accounted for. I don't want to OD ds on iron (warnings on bottle prescribed by GP about keeping out of the reach of children as overdose can be fatal) and excess iron can be toxic to children

Similarly I don't want it to be a case of medication stops and ds gradually becomes anaemic again. We need a balance.

[claw2]

For me that is Polter, sorry it sounded like I meant for you!