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help! Dietician has cut our neocate prescription!!

(5 Posts)
Jessbird1 Fri 11-Nov-16 20:32:00

Hi all,
I need as many people as possible who's children have allergies and are still prescribed neocate over age 2 to reply to my post so we can use it as ammunition to stop them taking my very fussy 2 year old with multiple allergies off it!!! Dietician wants us to switch onto just Koko milk, despite nhs website saying children under 5 shouldn't be given skimmed milk due to its low calories, and Koko milk having half the calories per 100ml as skimmed milk. He cannot tolerate any of the other milk options, will not eat Koko yoghurts or custard or chocolate pudding made with Koko milk. Will only eat 5 meal types with barely any actual meat, is so fussy he will only eat potato as chips or inside of baked potato (not even mashed) yet they still seem to want to cut it. I've seen posts where people have said their child went onto active and they can stay on this until 10!!! Dietician point blank refused saying she wasn't allowed to prescribe active over 2??!!! I am tearing my hair out as it is hard enough already dealing with the fussy eating let alone then being told the milk which we rely on for vital nutrients and which takes the pressure off a bit is now being cut! Please post if your LO is still on neocate over 2, to help our cause, thank you!!

CaesiumTime Sat 12-Nov-16 14:49:25

Your GP can prescribe the Neocate - I had a DS exclusively fed on Neocate until he was nearly 6 years old. It was prescribed through the GP following private prescription from a paed gastro.

As it was, the dietician wouldn't have prescribed it for him anyway but it was what kept him alive.

You could pay privately to see a Paeditrician and get them to write a letter stating that your child needs Neocate, take it to the GP and the GP will prescribe it off the back of that.

Alternatively you could request a second opinion via the NHS if you feel that a dietitcian is your only option. You could find a favourable dietician and ask for a referral to them and get it via them. You have a right to a second opinion.

Jessbird1 Sun 13-Nov-16 17:12:20

Thank you so much for your reply. It's very good to know we have other options and will ruthlessly pursue them until we get the prescription our son needs. Great idea to try the private paed, didn't realise they could recommend the GP prescribe it. We will see if the GP will over rule the dietician as it were and go from there. It really says something when they place the cost factor over and above the well being and health of a child. Sounds like you have been to hell and back, I hope your DS is doing well. Xx

compostheap Mon 14-Nov-16 21:18:11

Private or not doesn't make any difference - depends on whether a paediatrician or a dietician says that the quantity you are currently getting is needed, AND the discretion of the GP. But I wouldn't rush to go private, hoping that this alone will make a difference.

user1467273391 Tue 15-Nov-16 15:50:42

Our son was on unsweetened soya milk from when he turned 1 due to allergies. Calorie wise it's not a big difference to the koko milk. We weren't bothered by the lack of calories as our son was a good eater at that age.

If you are bothered about calories can you add calories into the diet with other foods. E.G. avocados (mixes well with bananas), dried fruit, peanut butter etc. I know it's easier said than done with fussy eaters.

If you decide to try your child on the koko you could try mixing them. E.G. start 90% neocate and 10% koko and slowly increase the koko over a few weeks until he's entirely on koko.

If lacking meat you could always look at other forms of protein, e.g. lentils are great in pasta sauces.

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