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AIBU to want everyone to know about this?

(29 Posts)
Ghostsdonttalk Mon 24-Feb-14 12:25:53

Ds now aged 12 was taken off Formula at about 8 weeks due to milk allergy and prescribed soya milk, he can now tolerate a little dairy but is largely dairy free since.

For the past two years he has been lacking in energy, muscle aches and pains and severe stomach pain.

We had seen numerous GP's consultant paediatrician etc and could not get to the bottom of the problem. Last week we discovered he is seriously low on Calcium and Vitamin D and has a stomach ulcer due to the ibuprofen he has been taken for the pain.

I am seriously annoyed it has taken two years to get a diagnosis and that we were never sent to a dietician when he was taken of milk.

If you or your child don't take dairy products for whatever reason please look at your (their) intake of calcium and Vitamin D.

JiltedJohnsJulie Mon 24-Feb-14 12:32:35

So glad he has (finally) been diagnosed and you are getting some help smile

LimitedEditionLady Mon 24-Feb-14 13:25:00

Id expect a Dr to realise that taking dairy away would cause low calcium and vitamin???Im pretty shocked.

Piscivorus Mon 24-Feb-14 13:35:47

Not that it helps you and your DS but guidance to GPs now states that soya formula should not be prescribed under 6 months old.

Waltonswatcher1 Mon 24-Feb-14 13:47:34

I am horrified at the bad allergy advice or lack of it , that parents are given .
My dietitian and consultant are brilliant and we are seen regularly . This seems rare .
There is a shortage of the calcium that's usually prescribed to kids so we have now been told to use Haliborange chewy vit d and calcium . It's a fiver for a months supply .
On the ibruprofen issue - my two year old had internal bleeding as a result of taking it . I questioned the use of it in her case as she has suffered with bowel inflammation .The hospital said she needed it for the awfully high temps . Two days later we were back in with horrendous black tarry nappies -internal bleeding .
Ibruprofen is a great drug but many users are unaware of the risks and life threatening side effects .
I hope your lad is going to get over this quickly and suffer no long term effects sad

Waltonswatcher1 Mon 24-Feb-14 13:49:53

Can I be a real pest and say that if I were you I would steer clear of gluten in his diet for a few months . His gut will need time to recover and it needs all the help it can get . IMHO !

CouthyMow Mon 24-Feb-14 13:52:48

I'm shocked (having a seriously CMPA DC) that you weren't referred to an allergy specialist dietician who could advise you on ways to get calcium and vitamin D into their diet.

Wasn't the soy milk you were using fortified with Calcium and Vit D? Neocate Active and Nutramigen 2 both are, and they are replacement formulas for DC's allergic to milk and soy.

The intestinal issues with ibuprofen are well known, and some people are just more sensitive to that than others. That one is unavoidable, IMO, the child needed pain relief, that pain relief CAN have side effects (which are noted in the patient information leaflet you get with every bottle of children's ibuprofen syrup), and unfortunately that affected your child. I wouldn't be angry with that, the info leaflet tells you as a parent what symptoms to look for and when to go to the GP for advice on symptoms that might be side effects.

I'm shocked at your GP and allergy consultant not referring you for dietary advice though - rickets can be a huge issue in children with CMPA if calcium and Vit D supplements are not given, either through their milk replacement or as a supplement. That I WOULD be angry about!!

Oranges actually have a LOT of calcium in btw - one medium orange and a portion of broccoli gives almost an entire portion of Calcium for a preschool age DC.

CouthyMow Mon 24-Feb-14 13:53:28

Walton - we use haliborange too, it's dairy, soy, nut free.

CouthyMow Mon 24-Feb-14 13:55:23

If he's 12yo, then he might actually need an ADULT calcium and Vit D supplement. Wilkinson's do them the cheapest, they still do the job fine if my blood tests are anything to go by.

Ghostsdonttalk Mon 24-Feb-14 14:25:00

Yes Dr to prescribe Calcium but need to correct Vit D first.

I do know the side effects of ibuprofen but it wasn't that he was getting it everyday.

I am not sure what Wysoy had in it 12 years ago the guidelines on Vit D have changed since then. Although he can't have been deficient until about 9 yrs so. I was using the Haliborange but it not every single day.

Waltonswatcher1 Mon 24-Feb-14 14:32:43

I knew about the side effects luckily but many parents don't . I know this from talking to people about our experiences . The symptoms also can show themselves when the damage is done .As in this case .Too late then to read the leaflet .
I am obsessed by my daughters poo and keep a close eye on it (first sign of trouble brewing re life with allergy damaged gut !) . With my other kids the nappies full of digested blood would probably not raised my suspicions for a few days , most of us would give it a while before bothering a gp .
In our case it was a consultant who wanted to use ibruprofen despite the history . People trust doctors and although some of us have the confidence to question their decisions ,some parents don't .
Couthymow -adcal is an adult calcium supplement with vit d that's on prescription .Its allergy friendly !

Waltonswatcher1 Mon 24-Feb-14 14:34:27

Op is he ok now ?

Waltonswatcher1 Mon 24-Feb-14 14:36:38

Me again! Sorry.
Just wanted to say kara coconut milk is calcium enriched . I thinks great for kids as its so delicious .

Ghostsdonttalk Mon 24-Feb-14 20:57:52

Waltons, he is now being treated by a GP who appears to be very good. Not sure if I should ask for referral to peadiatrician.

I think he will be fine but it will take a while, stomach is very sore still.

candycoatedwaterdrops Mon 24-Feb-14 21:15:55

Who was prescribing the ibuprofen without a stomach protecting drug? shock

Ledare Mon 24-Feb-14 21:15:58

OP how horrible for you and your son.

I remember reading about the Webster family years ago. One child was told to have soya, no additional supplements and an unexplained broken bone caused all three DC to be taken and adopted. A terrible miscarriage of justice.

YANBU. Everyone should know about this.

Waltonswatcher1 Mon 24-Feb-14 23:21:56

Glad he's ok .
I can't read that report as I know it'll upset me .
I am worried you were using Haliborange , I am going to email my dietitian tomorrow and check the dosage .
Roll on the summer for some natural vit d .

Racehorse3007 Tue 25-Feb-14 02:07:23

I am horrified by this as a student nurse. It's the first thing we're taught about ibruofen, you must must MUST eat when taking it, esp. Over long period of time, and for a GP not to know about the calcium thing is ridiculous too! That said, I'm glad you now have a diagnosis and things start improving for you xx

Kaida Tue 25-Feb-14 06:19:14

Slightly concerned now - DS (aged2.6) is CMPI and we've not been referred to a dietician, just told cut out dairy. He still has 2 BF a day which helps and he does have fortified oat-milk but when I asked the GP how I would know if he was getting enough calcium she said don't worry there's calcium in lots of stuff.

paxtecum Tue 25-Feb-14 06:39:18

Your son is 12 now, so whatever Wysoy had in it when he was a baby will not be responsible for his recent lack of calcium and Vit D.

Does he have the soya 'milk' with added calcium and vitamins?
Is his diet in general good?
He needs some vitamin and mineral supplements.

Sunshine is a great provider of vitamin D and it will be summer soon.

Ghostsdonttalk Tue 25-Feb-14 07:33:00

Kaida are you giving a Vit D supplement? I think Vit D is the harder one to get appropriate levels off.

Paxectum I agree Wysoy not the problem ( I was answering a question) he eats cheese yoghurt eyc with calcium and the Kingsmill 50/50 bread which has added Calcium. I had worked out his RDA and I was happy he was getting the calcium needed. I hadn't considered Vit D.

LadySybilVimes Tue 25-Feb-14 07:39:16

Vit D and calcium are closely linked. I was prescribed a vit d and calcium supplement by my GP which was almost miraculous in how it affected me once I started taking it. There is D2 and D3, D3 is the better one as it takes longer to break down in your body so the effects last longer. There are very few foods with Vit D in them, sunlight is by far the best method of getting Vit D.
My sympathies to your ds. It is really painful.

LucyLasticBand Tue 25-Feb-14 07:42:35

vitamin D levels is something that is commonly low in all of us in the UK, we need the sun, in fact they are talking about supplementing food with vitamin D, they could be doing it already.

Ghostsdonttalk Tue 25-Feb-14 09:50:11

Two important things about Vit D and sunlight, you can't get it through glass or sunscreen.

When Ds started to fell unwell he stopped football and going to the park because his muscles hurt which ( we didn't know at the time) reduced his Vit D levels even more. He did have a full week in Lanzarote last summer but would have had sunscreen on most of the time.

JiltedJohnsJulie Tue 25-Feb-14 13:29:46

kaida 2 bfs a day should provide enough, especially if you are getting outside once or twice a day. If you want to check though I'd ask the HV for a referral and speak to a BFC about what you BM will be providing. The helpline numbers are heresmile

Things like avocado, almond butter on 50/50 bread, sardines on toast should all help. There's more info here

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