Does anyone know which specialist i would need to see, im really, really worried?

[claw3]

My ds has been taking anemia medication for over 3 years now, he is still a deathly shade of white and im really not happy.

No one is actually keeping a eye on this, its just a case of repeat prescriptions. I had to demand a blood test recently, his 1st since being diagnosed as severely anemic 3 and half years ago. All GP does is read his hemogloblin levels and tell me they are fine.

I was told 3 years ago that he wasnt anemic, after Dr at hospital read his hemogloblin levels and said they were fine. Only to discover a year later that he was severely anemic and results were read wrong. Apparently you also have to check Transferrin levels, ferrilin, folate, etc, etc to get the bigger picture.

I recently had to take ds to hospital after he had difficulty breathing. A&E told me chest infection, x-ray showed shadows on his lungs, a bilateral hilar - when googled one of the causes of this is anemia.

GP has referred to chest specialist and i also asked to be referred to dietician.

Is the dietician the person i need to see for this?????

As your son has been supplementing his diet, I'm not sure what help the dietician will give you.

How were his B12 and Folate levels because breathlessness can be a symptom of pernicious anaemia ?

Spatone? Or Floradix? My blood iron is just about OK, but my stored level is low. There are lots of rules for taking iron - it is best on an empty stomach (makes me throw up), not near milk and tea, best with vitamin C...Dietician might help with that aspect.

Vjg - My GP doesnt read any levels other than hemogloblin. I feel like im shouting but no one is listening.

Riven - He is taking Sytron 2.5ml 3 times a day and calcuim supplement twice a day. He has a very poor diet (caused by disorder), all he has eaten for the last 4 years is basically chocolate spread sandwiches, sweet stuff and a bit of fruit sometimes.

My concern is because of his poor diet, experts have always assumed this is the cause of his iron deficiency. No one has ever checked to see if iron supplements are being absorbed etc, etc. He is extremely pale, everyone always ask me, 'is he always that colour or is he ill', its so noticeable.

Riven - Sorry missed that bit, yes we have been seeing the Community Paed for about the last 2 years. Do you think he should deal with it? He was the person who referred to dietician 3 years ago.

I think you have to avoid taking the iron at the same time as calcium? I tried Centrum and my stored iron fell, the gp told me it was the calcium in the centrum preventing the uptake of iron.

Sorry getting my knickers in a twist here, HV referred to dietician 3 years ago. Paed referred to CAHMS, who wrote back saying inappropriate referral. He also referred to OT.

His diet is vegetarian! Does he do dried fruit which has iron (I am bad on dried fruit myself), or fruit juice which you can put spatone in. (Still tastes metallic.)

Stleger - He does take them at the same time, this was never mentioned to me. They did tell me to take with food, pfft HELLO he doesnt eat!!!!

I would have thought a haematologist (ideally a paediatric one would be the appropriate specialist.

you might find this info useful www.mayoclinic.org/anemia/

Stleger - This is all he has eaten in the last 4 years.

Chocolate spread sandwiches
Chips (skinny ones and have to have salt on)
Potato waffles (have to have salt on)
Honey hoops (no milk)
some fruits
Yogurt
Ready salted/salt & vinegar crisps
Vanilla ice cream
Certain cakes
Certain biscuits
Certain sweets
Certain ice lollys

vegetarian LOL what a lovely way to put it. When asked by the Paed when he was 3 'do you eat fish', he laughed and said 'dont be silly your not allowed to eat fish, they swim in the sea'. How about chicken he scoffed they live on farms. Then turned to me and looked as if the Paed was a mad women for suggesting such a thing

I am currently taking my tablet - I can only process one a day - about half an hour before food, late afternoon. Pharmacist advised me to try that, it at least stays in my system. Have you a sane pharmacist you can talk to? I find them a bit hit and miss, pharmacists used to be wise and elderly, now they are young and inexperienced! But they could at least check if the meds were preventing each other being absorbed. (My homeopath told me the same re calcium, she is a gp so it must be valid if 2 sources say it?) I am supposed to take probiotics too, but forget. DD2 takes probiotics in powder form which you could slip into chocolate spread; she has a kind of over reactive immune system which makes her very sick, the medical advice is to 'avoid picking up infections'. Probiotics seem to have helped her.

Can you not see a different GP. If you ask for a full check of his iron status including B12, Ferratin, Folate and serum iron then you'd have some idea of where you need to go. These are simple tests and you'd have the results back quickly.

My dd1 has high iron levels, she is 15 and was tested after fainting dramatically in Primark handbag dept. Her diet would be: Special K crispy bites for breakfast, a slice of pizza for lunch or chocolate if pizza is sold out, sausage rolls and potato waffles for dinner; other possible foods are banana sandwich with a bag of salt and vinegar crisps, occasional pancake, or a food fad of some item she 'loves' for a short while until I stock up on it and she goes off it. You have my sympathy!

Thanks Total - I think that may the ONE, the specialist.

I think my OT can refer, im going to try giving her a ring and see if she can. My GP thinks im just an over anxious mother.

vjg - Thats the frustrating thing, he had a full blood count test done in Dec, my GP is just unable to see past the end of her nose and read the bloody results!

All she is relying on is his hemogloblin levels, despite me telling her thats what the Dr at hospital did by mistake many years ago and misread the results.

Im getting from her, he is not anemic, i have read the results (hemogloblin), im a Dr, your a patient, stop telling me how to do my job.

I feel like screaming!

I get the feeling this is the reaction im going to get from most GP's, i need someone who understands about blood results.

Claw, a FBC does not include these results. Most GPs will not have this reaction to you, yours just sounds crap. These are basic first line tests.

I don't think an OT will be able to get you a heamatology referral although the Comm. Paed can.

I'd have thought the paed should be able to order the correct blood tests. It was the paed that ordered ds1's bloods done when their were concerns about ds1's diet.

He was foudn to be aneamic and also (incorrectly) calcium deficient, so was referred to a consultant that deals specifically with that deficiency. Paed should def be able to get the ball rolling and then make appropriate referrals.

Thanks guys, ive been getting my knickers in a right out twist!

Just spoke to OT, she is going to phone paed immediately and tell them to bring my 6 monthly assessment forward as a matter of urgency.

Does anyone have a large brandy to hand, my nerves are shattered.

You need to find out current information from comm.paed
1.is his haemoglobin normal?
2.If normal now,has it been abnormal in the past?
3.Is his serum iron[ferritin] and other iron stores normal?Have they always been normal?
3.Have his B12 and folate ever been abnormal?
If his haemoglobin is normal,he is not anaemic by definition.
If it is abnormal now or in the past,you need to know the cause and that is indicated by the other blood indices/results,namely
~If iron is low with pale red blood cells in the blood film[looked at under microscope]it is iron deficency anaemia caused by blood loss or poor iron absorption [coeliac disease,inflammatory bowel disease etc],or verypoor diet.
~if there is not low iron and film as above could beanaemia of chronic disease,any chronic illness can cause this but would be something definite,not just transient infections etc.
[There are other causes of anaemia depending on the blood results picture]
So first you need to know if he is/has been anaemic,then you need to understand the type of anaemia,then you need to find the cause.

A child could be unwell and pale without being anaemic.

Has he any bowel symptoms?
Does he get frequent bacterial infections?
Has he had chest problems before?
What is the cause of the shadows on his lungs?it can be infection,inflammation or other.
Hilar lymphadenopathy describes enlarged lymph nodes in the chest area which can be secondary to infection or other causes.

Get an appt with your paed from his secretary if you are allowed,explain you are worried and don't understand what is wrong,whether he is anaemic or not and if he needs investigation for the cause of it or his chest problem
Phew sorry got carried awaybut hope this helps

Claw, hope you get an appointment quickly and you get some answers. Let us know.

Big deep breaths! then brandy.

Morning Sun - Thanks i have just copied and pasted your comments into a word document, so i can ask these questions when i see the paed.

In answer to your questions (or was these also questions to ask paed, sorry my brain isnt working!)

His bowels seem fine, regular and not constipated.

bacterial infections - No, although in the last 4 months we have been to hospital 4 times with breathing difficulties and he is not asthamic.

chest problems before - yes, we have been to the hospital a few times over the years with breathing difficulties, more regularly recently.

What is the cause of the shadows on his lungs? Dr at hospital wrote in his referral letter bilateral hilar and told me anemia can cause this, as well as infection. He was concerned because shadows on his lungs were now more prominent than x-ray taken 2 months previous.

vjg and stleger - Thanks, ive settled on a coffee!

Im so angry with myself since hospital visit. I should have done something sooner, he is still soooooo pale and ive just plodded along believing what the Dr's have been telling me. I should know better, question, bloody question, everything im told!