The consultant just rung...... 8:30pm!!!!

I have to say she has restored our faith in the hospital and we know they are going to support us until Amber is sorted.
She has spoken to the dietician today and they both agree that Amber is no longer tollerating soya milk. From tomorrow Amber will be prescribed a specialist milk called Neocate, Gillan had already researched alternative milks so we have loads of info on it and it seems perfect for Amber and her multiple intollerances. It contains everything Amber needs but in its rawest form so it's easy to digest. The downside to it is it tastes awful! We need to wean Amber on to it over the next few days mixing it with the soya.

We are to give it at least 10 days before introducing anything to Ambers diet and when we do it will again be done with the guidance of the dieticain who is ringing us next week.

If Amber continues to be ill on the neocate, Amber will be admitted to hospital immediatly for tests and an endoscopy under general aneasthetic. At least if this happens, it's a means to an end. I personally think she'll be ok on the milk so here's hoping!!

Wish us luck!!!!

ps Thanks again for all your support, ladies! xxxxx


  • Tasha, at long last some positive news for you.
    I really hope this milk helps Amber.
    I bet you'd given up waiting for the call tonight.
    I wish you all the luck in the world that this time something agrees with her little tummy.
    When does she start the new milk?
  • Hi Tasha that's great. At least you know if this doesn't work then they are taking it very seriously. Fingers crossed she won't have to be admitted but at least you know they are doing everything for you.

    Zoe xx
  • As soon as we can get hold of it!!
    The consultant's calling Ambers GP tomorrow but i'm guessing the chemists will have to order the milk in. I just hope she's on the milk before she gets ill again.
    Thanks for the message, i hope you're well xxx
  • Hi Tasha. I'm so pleased that something is being done at last. As long as the GP can issue the prescription asap then the chemist should be able to get odd things like this special milk in around 24hrs. That is how long it took to get Bon's. Do you know if it comes in dried or ready made? I only ask as if it is ready made and you are prescribed enough to last a few weeks it will be heavy and cumbersome and you may need to think about transport, picking it up and getting it home etc.
  • Yay Tasha,
    thats brilliant news. I truly am so very very happy for you and Amber. I really hope it works for her. You must be so relieved. Its fantastic!!
    I hope you sleep better tonight!!
    Cant wait to see you all on Monday.
    Have a fab weekend, and catch up with you at some point (no doubt).
    Kas xxxxxxxx
  • Hi Tasha
    Finally a little bit o good news!
    I really hope Amber will be ok on the milk xx
  • Hi Tasha,

    Hope you she does really well on the new milk, keeping everything crossed for you

    Love jd_mummy xx
  • Thanks so much for the messages!

    WE got hold of Ambers milk today and she had it for the first time at 6pm, we are to wean her slowly so we only put one ounce of neocate to 8oz's of soya and we'll up it with each feed.

    Gillan enquired how much it is to buy over the counter in case we ever run out and unbelievably it's £38 for 400grams!!!!! That means that it will now cost £20 a day to feed Amber (£4 per bottle), thankgod for repeat prescriptions otherwise we'd have to remortgage!!

    i'm just praying Amber takes this milk and stays well will keep you all posted, thanks again xxx
  • Fingers crossed this suits Amber's system and doesn't make her poorly. Does she seem ok at the moment?

    I don't want to leave out Ethan so how is your little man? Is he picking up on the Christmas vibes yet?

    Zoe xx
  • Hi Tasha!
    I am finally managing to catch up on the posts that I've missed!I know we are chatting on MSN but I thought it would be rude not to respond on here too!

    I am so pleased that the Docs are taking you seriously! I would suspect at the cost to the NHS of the milk that you are using, they won't prescribe it willy nilly! Keep us posted on how Amber gets on with the new milk!

    We've got our fingers crossed for you!!
  • Hi Tasha
    Really glad you have got hold of the milk and i have everything crossed that this is a turning point and she will be ok on it xx
  • Well she's just had a feed with 7oz's neocate and 2oz's soya and she took it no problems! Gillan decided to try it though and very nearly gagged he seemed quite upset that she has to drink this stuff!!

    Amber on the other hand is quite happy!!
  • Hi tahsha
    Glad she's ok with it,hope it goes well for you.
    keep us posted

  • Hi Tasha

    I'm so pleased for you!!!!
    I really hope it makes a difference!!

    Take care xx
  • Ambers now on full Neocate feeds and she's taking them fine! She's leaving a couple of ounces each time so i was worried she didn't like it but we now think that perhaps it's filling her up better than the soya, after all it's designed for children on a very limited diet.

    Sorry for TMI but she's just had her first dirty nappy since the change and OMG it was spinach green!!! I've no idea if this is normal or not so we'll just keep an eye on it i guess!! (lovely)!!!
  • Hi Tasha
    So glad Amber is taking her milk and it is filling her up.

    There taste buds must be different to us, as some of the things Jessica likes, taste disgusting to me xx
  • Thats great tasha. Really glad she likes it.
    The spinich coloured poo's, may be because the milk is rich in iron.
    Just a thought!!
  • Arghhhhhhh i have to share this with you or i'll go mad with frustration!! Our doctors are unhappy to pay for Ambers milk and are hoping to get it stopped!!!!!
    They're ringing the dietitian tomorrow to ask the reasons shes on it. So we phoned her today!!!!!

    She explained that initially it is only for 2 weeks to give her digestive system a rest and she will insist the doctors prescribe enough milk to cover that. She's trying to book us in for a review in 2 weeks to decide what milk she'll be on (nice christmas treat-not)!

    Amber is so settled on neocate though and we've noticed that she's napping better sleeping longer at night without a feed and playing on her own more!! Oh we found out whats caused the spinach pooh! we looked on the neocate website and it had a whole section on it! it's because the body doesn't need bile to digest the food (as the milks so basic it doesn't need digesting)! so the bile comes out in the nappy and is perfectly normal!!
  • Oh Tasha, i'm so sorry.
    I really hope the dietician manages to talk some sense into them, it may be expensive but surely it's worth it if it makes Amber better(which it seems to be doing). I get so cross, you and your husband will have paid into the nhs and now when you need something back they're not keen to give it because it'll cost them too much money.

    I'm really pleased that she seems happier and more settled, and you've discovered the reason for the 'interesting' nappies!!!

    I'm keeping my fingers crossed for you!!
    Take care
    Dawn xxx
  • Hi Tasha,

    Have the Doctor's not read Amber's notes? Surely they must realise she's on it for a reason. It must be hard for you to see her so happy, knowing that there will be a change again soon.

    At least you have been able to find the reason behind the green poo! One less thing to worry about.

    Take care, Zoe xx
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