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?????

claw3 PHONE YOUR PEADS secrerary ask for a sooner app, and ask for blood test say how worried you are and not sleeping!

Thanks Trace - I have phoned, appointment book wasnt available, they were waiting for the secretary to return to the office, they are going to phone me back in about an hour.

I also phoned OT and told her, she said she would also get onto them immediately and tell them how urgent it was that i see someone ASAP.

Just a matter of waiting an hour now

i think he needs celeac tests hows is weight? keep us imformed

His weight is above average, so is his height. This is kinda like another red herring for the experts if you know what i mean. It hasnt affected his weight/height, so there is no concern.

Because of his disorder, he is over responsive to taste to such a degree that he can only tolerate sweet tastes. So because all he has ever eaten contains lots of sugar, his weight doesnt suffer. If i cut out the sweet tastes, he loses weight drastically.

In a year and a half he has put on one kilogram, so the fact he is putting on and not losing, they are not at all concerned.

tell them what you just said they need to here your fears as your his mother, mothers know best as my dd pead always says!

taking dd to respite now ill check later to see if they phoned back

Trace - I feel i have been telling them, its just falling on deaf ears. Ive been kicking up a fuss, trying to make myself heard, perhaps just to the wrong Drs.

I just phoned them, hour was up. He is still waiting for the lady to get back to him to see what appointments are available.

ARGH!!!!

Hope all goes well at your appointment

Riven - He is suspected of having sensory modulation disorder, currently under OT.

He is over responsive to taste, touch, etc, etc. Because he is over responsive to taste, the most sensory tolerable food is sweet, salty, vanilla in that order.

I have tried only giving him food that i want him to eat. He would rather starve than eat it. Its not that he wont eat it, its that he cant eat it. The message being sent to his brain is misinterpretted.

DD1 (handbag fainter) had a friend a few years ago with growth problems. She was also not a good eater, in fact dd1 used to 'go to tea' to set a good example. At one hospital visit a helpful professional advised 'Don't worry, most kids can survive for 2 years on a diet of coke and crisps'. In front of the picky eater. I hope you can find the cause of the anaemia - my gp is threatening me with 'further investigations' if my level stays low. All the best to your ds and I hope they get back to you soon!

stleger - How thoughtful of him, honestly i despair for these professionals, havent got the sense they were born with (god i sound like my mum now)

The Dr who first misdiagnosed his anemia, when she phoned to tell me he didnt have anemia commented 'he must be getting his iron from somewhere'. FFS hmmmm let me think oh yes, that would be from 1/4 of chocolate sandwich he eats!! or does that mean 'you are a bloody liar, your son is obviously eating something with iron in it'

Why do they think your levels are low? (apologises if youve already told me, my mind is elsewhere)

Mine are low because I am vegetarian and I have always been thinking about protein and calcium and forgot about iron! It is also harder to absorb from non- animal sources, so my dentist advising me to 'eat steak' doesn't help. I sympathise with your ds, it is hard to be offered food you know you can't eat - I dropped meat as a child, and agree with his fish analysis. I wonder would nutella consider a 'fortified' version, there must be a market for it. Just remembered, my current iron tablets are French and vanilla flavoured, and chewable - Ferrum by Hausmann. I wonder if they would suit his needs?

The dietician told me that although nutella and breakfast cereals are 'fortified' the amount of iron they actually contain is so small, you would have to eat an awful lot of it each day to meet requirements.

Thanks for the suggestion of vanilla flavoured iron tablets, i will bear that in mind. He currently takes medicine form and seems happy to do so, i dont want to rock the boat. But if ever he has problems taking this, i have made a note of the name you suggested.

His diet is also starting to take its toll on his teeth, accompanied by oral defensiveness, limited teeth brushing, well you can imagine.

I just wish someone would treat it with some urgency.

So how do you keep your iron levels up, without eating meat, any suggestions? (i will try some dried fruit again)

Just had a phone call, apparently the secretarys who deal with appointments are all off until Tuesday and someone will have to get back to me then.

Thanks ladies for all your help and support as always.

claw3 keep strong ((((big hugs))))) keep us imformed

Thanks Trace and much appreciated

Have they gone to caddy for the consultants who are off playing golf! My neighbour has terrible dental problems caused by some 'iron tonic' he took as a child. (He is early 40s), and I get odd stains on my teeth when I take the tablets. Hence my discussions with dentist. Would he eat anything like toasted teacakes with fruit in them? All the vegetable sources like spinach and watercress wouldn't really appeal I don't think. Although dd will take watercress soup which is fairly bland.

Claw
you've dpne me a favour- my iron rates are deathly low and i'v e been merrily taking my meds with my calcium and wondering why i'm fallinga sleep at 2.... you learn something new every day!

Orange juice drunk with iron helps your body to use it (or any vit c high drink- cranberry etc). You can make it into lollies and bake into cakes / biscuits too but of course there are no guarantees he will take it.

Hi claw was trying to explain the approsch to anaemia so you are well armed with understanding so to speak.
Re his chest,likely questions are
~has he got a cough?
~does he cough any mucus up
~has he ever coughed any blood up?
does he get out of breath easily?
also
~has he lost weight?
~does he have a fever/sweats in the night
They will look for signs of infection,maybe even TB esp if he has had any contact with it.
They may screen for inflammatory processes to see the cause .

Obviously, a specialist paed chest consultant might have a different view on the x ray appearance from the other dr

Stleger - LOL @ golf caddy. Oh no, he wont eat anything with 'bits' in. I will just keep trying i guess.

Plainoldpeachy - It seems you have to become an 'expert' yourself, in order not to be fobbed off by the experts! He wont drink orange juice. I have tried to disguise things in the past and if he suspects foul play of any kind, he will remove that item from his 'ok list'.

Morningsun - Thanks, my head wasnt with it!!

Good news I have an appointment to see Senior Paed on thursday!! Got a phone call today, the round of golf must have finished early

thats great claw ,welldonex