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Allergies and intolerances

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Original poster

nutramigen stopped working any alternatives??!

29 replies

Ellibop · 20/05/2008 06:41

Really hoping someone can help as feeling desperate.My 7 week old has a dairy/soya intolerance and was prescribed nutramigen. It's worked fine for a week but now symptoms are back -not sure why. Are there better alternatives i can ask my doctor for - is neocate likely to be any better for him? Really thought it was sorted and am desperate to find him something he can manage.

OP posts:
CantSleepWontSleep · 20/05/2008 07:58

There are a few children who can't tolerate it, and I think you're right that neocate is the best alternative. Go back and see your paed and he should be able to help.

What are his symptoms?

jasperc163 · 20/05/2008 08:06

Ellibop,
My DD started on Nutramigen but got worse again after 2 weeks. At the time we saw a paediatric gastroenterologist privately as GP wouldnt refer her. He said that they can develop an intolerance to Nutramigen within a couple of weeks or so (it does initially help) as it is only partially hypoallergenic - it has hydrolysed milk protein in it, whereas Neocate is made up from amino acids (no milk protein in it). So DD was put on Neocate (still on it now at 2.5yrs).

However depending on your health authority you may have a problem getting it without a referral to a paediatrician as it is hugely expensive. Our GP in Suffolk was happy to go with private paed's recommendation. When we moved to Herts we had to see a NHS paed at the hospital (every 6 months) in order for the GP to prescribe it.

So if you get resistance from your GP (on cost grounds) you need to insist on an appt with the paediatrician.

hth
alice

Original poster
Ellibop · 20/05/2008 09:46

Oh, hope doc will prescribe it. Couldn't get an appointment but have requested prescription, will find out this afternoon if approved. Thr pharmacy have some in and i'm tempted to buy some to tide us over but it's £33 a tin, can't keep giving nutramigen though as getting worse with each feed. He couldn't tolerate breastmilk and i assumed soya made him bad as he reacted after i'd had some soyamilk but was also having dairy at the time too and have since read that soya doesn't pass through breastmilk...wondering whether to try him on soya formula - any advice gratefully received.

OP posts:
CantSleepWontSleep · 20/05/2008 09:55

Are you still producing any breastmilk? I just had to give up all dairy from my own diet to make sure that dd could tolerate mine. Worth a thought if you would rather re-lactate?

dutchmam · 20/05/2008 09:58

Hiye, soya milk had no dairy in it, but about 50% of kids who are dairy intolerant will develop soya intolerance as well. There's also some question about the presence of phyto-oestrogens in soya and giving it to boys. There's some research about it influencing their future fertility.
So although it wouldn't harm your ds in the short term, it would probably be better getting the neocate. If your GP was happy to prescibe nutramigen then should be easy to change over. Hope you get it soon and yr DS improves.

eddiejo · 20/05/2008 18:37

Definatly Neocate - best around. (although smells nasty!!)

Original poster
Ellibop · 20/05/2008 18:38

I'm mad at myself for giving up bf-ing last week as decided couldn't cut out all sources of dairy. Doc won't prescribe Neocate and is referring us to a paediatrician but how long will that take? Baby's getting worse - he's just thrown up last Nutramigen feed and it's heartbreaking to see him so unhappy. Feel desperate but don't know what to do.

OP posts:
eddiejo · 20/05/2008 18:43

If he is having too few wet nappys and is constantly throwing up - I would take him to A & E - and fast track to paeds.

Or phone HV am??

CantSleepWontSleep · 20/05/2008 19:17

Ellibop - if you only gave up bf'ing last week then you absolutely can start again. Will take a bit of hard work for a week or two, but perfectly do-able. If you want to do this, then start a thread in 'breast and bottle feeding' asking for help on relactation a week after stopping. There are some experts who will help you with this if it's really what you want.

jasperc163 · 21/05/2008 06:58

ditto eddiejo - take him to a&e and fast track to paed in the hospital if its that bad.
Otherwise it could be a few weeks at the least. Alternatively you can always go private but of course thats not a cheap option, or buy some neocate in the meantime (also not cheap of course) to see if it helps - then you will have more ammunition to argue your case?
hope you get some help soon - i know how distressing it is
xx

jasperc163 · 21/05/2008 06:59

sorry just read that you only stopped breast feeding a week ago. In this case i would absolutely try to start again !

laura032004 · 21/05/2008 07:13

I know it's wrong, but people do sell Neocate on Ebay

At least that way you'd get 4 tins for the price of 1 from the pharmacy.

GordontheGopher · 21/05/2008 07:16

Eh? You can get Neocate on prescription so you don't have to pay for it at all!

laura032004 · 21/05/2008 07:21

But her GP won't prescribe it for her, and she is desperate. I know she shouldn't have to pay for it.

Perhaps going to the GP in person and crying.... might do the trick. I know when I really wanted to get DS1 some nutramigen, I broke down in tears (genuinely) to the HV, and miraculously got a prescription.

GordontheGopher · 21/05/2008 07:24

I got mine from ds' consultant - perhaps she needs to be referred to an allergy specialist? I could never imagine paying for it it's £4 a sachet!

Beachcomber · 21/05/2008 07:33

Not wanting to put pressure on you, but just wanted to say that both my DDs are dairy intolerant so I had to cut all dairy from my diet.

It is not so hard once you get into the swing of it and there are plenty (and better) sources of calcium. If you did fancy this as an option, there are loads of people on here who could give you advice on alternatives to dairy and on relactating.

If you are considering relactating it would be a good idea to get some one to one help from a BF professional IMO

Good luck, hope this all works out well for you and your little one.

Original poster
Ellibop · 21/05/2008 08:17

Due to a mix up at the pharmacy I managed to get 1 tin of neocate yesterday. He's shown some improvement already. Dr wasn't happy and told me to put him back onto nutramigen -i did for 2 feeds and he threw up, breathing worsened and he was screaming with tummy pain and gas, he's also totally lethargic and does nothing but sleep between feeds instead of playing and smiling like normal. Have gone back onto neocate but this will run out tomorrow. i just don't know how ill he'll get back on nutramigen, i can see us ending up in a&e which is a frightening prospect, especially when it could be avoided.

Am going to try and see doc again today and beg for prescription change, but i don't have much hope. I feel sick at the thought of making my little boy ill again by what i'm feeding him. will look on ebay as a last resort - feel it's too late now for me to get going with bf again and it takes weeks to rid system of dairy as i understand it.

OP posts:
CantSleepWontSleep · 21/05/2008 08:28

It isn't too late to get going with bf again, and it takes 7-10 days to rid your system totally of dairy, but the effects of it will lessen during this time.

(It's fine if you don't want to do this, but want to be sure that you understand that it is a valid option for you).

Original poster
Ellibop · 21/05/2008 09:22

maybe it's an option then, thanks for reply x

OP posts:
williamsmummy · 21/05/2008 15:39

I would again, ask your Gp for a prescription for a allergy milk, like neocate ( there is one other kind on prescripstion) and use it for 6 weeks, before changing to a partially changed formula milk.

sometimes the partially changed milks are not enough, as previous poster has said.

If you have decided that formula is the way forward, there will be an alternative that will suit your infant.

You can try breastfeeding again, but I dont think this is a promise/magic wand/ that its going to improve your babys health, unless you go down a strict removal of allergens from your diet.
Which may need lots of further advice and support from other medical proffesionals.
There are plenty of breastfeeding mums that get rather underweight removing foods from diet to control their infants ezcema etc.

I am sure that if you get a fully changed milk, stick to it for 6 weeks things will improve.

good luck.

Nbg · 21/05/2008 15:46

Why the fecking hell wont your gp prescribe the formula you need?!!!

That is appauling.

I know exactly how you feel.
My ds1 had to have prescription formula.

Call the gp's back, see a different one if needs be and tell them you want it.
Your baby needs milk and the one you are giving him is obviously not right for him.

eddiejo · 21/05/2008 21:05

Did you see the GP today?

Original poster
Ellibop · 21/05/2008 22:27

Phoned the surgery this morning and told them was worried about my baby as reacting badly to formula with poor breathing and being very lethargic. Couldn't see usual doc as booked up, the receptionist spoke with the duty doctor who told her that she didn't know anything about baby formula and if I was worried I should go to A&E!!!

Didn't want to just leave it so did take him to the hospital, ofcourse by this point the neocate had started to improve him and he seemed fine. Doctor was sympathetic but said my doctor needs to refer me to see a paed.

Have an appointment with doc tomorrow and will insist on referral, will see if going private will get me an appointment sooner as need to get this sorted. Have put the little mite back on Nutramigen as can see that the only way to be taken seriously is for them to see him ill, so as upsetting as it is that's what I'm feeding him for now. Just hope he doesn't get too ill on it, especially with the bank holiday coming up, feel worried could end up in A&E again with him before anyone listens to me.

OP posts:
Nbg · 22/05/2008 09:01

Oh Ellibop, I hope you get it sorted quickly.

Its horrible isnt it.

eddiejo · 22/05/2008 18:15

Thinking of you

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