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Allergies and intolerances

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Cost of Nutramigen

31 replies

carbooty · 01/08/2009 20:07

Hi everyone,

I had my baby(little boy) two nearly three weeks ago and have been buying and feeding him with Nutramigen as recommended by the NHS dietician (this is due to my daughter having a cows milk allergy and being unable to BF). I have been waiting for an appointment to take my DS into the pead day unit to try cows milk formula under controlled conditions, but this is taking longer than expected due to the extra strain on the NHS due to swine flu. In the meantime I have to continue to buy this formula and we have gone through nearly 8 tins in this time. Each tin costing £13. Can't get it on pescription until a reaction seen.

My baby will bankrupt us at this rate!! Does anyone know where the cheapest place to buy Nutramigen from?

The Dietician said that because the formula is so stripped out, babies tend to be hungrier and need feeding more often. He is having 3oz every 2-3 hours??

arrggghhh.......

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sarah293 · 01/08/2009 20:14

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carbooty · 01/08/2009 20:22

Hi Riven,

She has point blank refused!! I had to fight for an appointment to see a dietician too. She states that the prescribing guidlines are that no prescription until a true allergy seen, which is contradictory to the advise of the dietician but is the rule anyway.

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sarah293 · 01/08/2009 20:24

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sarah293 · 01/08/2009 20:25

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FourArms · 01/08/2009 20:25

Try going through your HV. That's how we got ours prescribed.

ilovemydogandmrobama · 01/08/2009 20:33

Riven, DS was prescribed Neocate and was told by the dietician at Children's that they don't like to prescribe Wysoy as those with lactose intolerances often also have soy intolerances.

But agree with others. Dietician is talking rubbish. But why is she recommending it, but not asking for it to be prescribed? How weird.

foxinsocks · 01/08/2009 20:33

I'm not sure they regularly give Wysoy to boys anymore do they?

having said that, a lot of children who are milk allergic have a soya allergy too so maybe that's why

I'm amazed at siblings being treated this way though. This never happened with my children. They were treated as individuals. I don't know how you can assume because one has an allergy the other one will?

ilovemydogandmrobama · 01/08/2009 20:35

Perhaps the precautionary principle?

foxinsocks · 01/08/2009 20:38

but I don't think there is a proven link in siblings is there?

just because one child has a nut allergy (for example) doesn't mean the next one will?

I'm just surprised that's all. I can't see the point in it until the child has proven allergic tbh.

I was nervous with my second, I have to admit, but even I didn't assume he would have the same problems as dd and nor did the paediatrician although he did think it was likely that ds would have reflux like dd (and he did!).

though as I said earlier, my children are far older now so maybe practice has changed.

foxinsocks · 01/08/2009 20:40

sorry, wasn't meaning to be disdainful

just seems like an awful lot of money to spend if it isn't proven and they won't prescribe it for you!

snala · 01/08/2009 20:41

We got ours prescribed but the doctor didnt like it because of his drug budget and it being so expensive!

Try your H.V or a different doctor.

ilovemydogandmrobama · 01/08/2009 20:42

Seem to recall reading recently there is a higher risk of allergies for the 2nd child if the 1st has allergies?

Will try and find article.

hambo · 01/08/2009 20:46

You can sometimes get it on ebay, cheap.

foxinsocks · 01/08/2009 20:49

blardy hell, you wouldn't buy it on ebay though surely?

sarah293 · 01/08/2009 20:53

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hambo · 01/08/2009 20:54

I think it is cos you get prescribed so much, then when you don't need it, you have heaps left over.

That is what happened yo me. I had to throw it out...(sorry OP)

PS if you could used Neocate I have spare stuff and you can have it at post price?

(It is the same stuff basically - my wee boy had milk protein allergy but gre out of it a few months back)

trixymalixy · 01/08/2009 20:55

Congratulations carbooty!!! I was wondering how you were getting on. I'm due tomorrow, can't believe how quickly the time has gone!!

Can you try and change GPs to one that's more sympathetic?

I agree that ebay is probably the cheapest place to get it.

foxinsocks · 01/08/2009 21:03

how awful Riven! poor you and dd

I also got it prescribed for dd but I must say, they were quite reluctant even though she had proven allergies. I think they thought I was making it up

carbooty · 01/08/2009 21:15

Thanks Trixy, How exciting, have you had any feelings things are happening?? I already miss not being pregnant, but I am sure it's only hormones!!

The problem with the GP is they will just tell me to go back to and speak to the original GP!! Plus she was great supporting me while I was having my mastectomy.

Which is another thing, I physically cannot breast feed and wondered if this should be enough reason to have milk prescribed?? I am so fed up with things being difficult!! I have been feeling gutted about not being able to BF, and not sure I am strong enough to fight this anymore.

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foxinsocks · 01/08/2009 21:18

I'm not meaning to sound sexist at all but do you have a partner?

I remember all too well the feeling of everything being a battle and one day, I cornered dh and asked him to go to the GP with me. I think the fact that both of us turned up and made a fuss made a huge difference. It shouldn't have done but it did. I too had lost my fight. There is only so much you can take before you need to bring in the reinforcements!

Even if you don't have a partner, perhaps a sibling or a friend? Someone who can go along and support you in the GP?

I dont' mean to sound all weak willed or anything but I so know what you mean re losing the will.

Hope you have some luck

carbooty · 01/08/2009 21:29

I do have a partner, and have brought him along once before. This seemed to antagonise my GP and she was vile, basically accused me of being neuorotic and that she didn't think my new baby will be allergic. It made my very upset. My partner is not the sort of man happy in a confrontational situation.

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girlsyearapart · 02/08/2009 06:23

Hi we are on Nutramigen AA after going through bf unsuccessfully (my own health) then Aptamil then Infasoy then Wysoy then Pepti then regular Nutramigen. When we saw the dietitian she gave us a box of each to try then faxed through prescription request to GP which was given no question. Very odd that the dietitian would recommend without prescribing as they know it costs a fortune.
What are your ds's symptoms? The soy formulas cost about same as regular formula but no good if it's allergy to cows milk protein. A friend was told by her HV that soy formula can make boys infertile?? Haven't a clue if that is true..
Also re the siblings question apparently you have a 25% chance of having another with allergies/ excema. We have one with and one without. The dietitian said if we have another dc at the first sign of any excema we would be prescribed nutramigen again.

sarah293 · 02/08/2009 09:05

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swishyswashyswishyswashy · 02/08/2009 09:21

www.patient.co.uk/doctor/Phyto-oestrogens.htm

We were told by a paed that as a precaution they wouldn't routinely prescribe soy formula any more as an alternative to cow's milk, but it's not something doctors and HVs are very consistent about yet.

Pitchounette · 02/08/2009 09:34

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