Help out of milk!

Hi, my daughter is 5 months old and has been diagnosed with Alagille syndrome. We have just managed to find a milk that suits her and she is now starting to put on weight. However the manufacturers of the milk have just informed us that there is none available until end of the month, I have 1 day of supply left! (Its been on order for two weeks) the name of the milk is Heparon Junior if any one has a spare tin I would really appreciate it.

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5 Replies

  • Have u tried ebay or amazon. Can get all sorts off there x

  • Have you tried calling all the pharmacies in your area some may have a couple of spare tine on the shelves

  • Hi, try ringing the hospital, we had similar problem last year when our son was on infitrinni peptisorb (I've still got an unopened box of it) & Leeds were able to give us enough to tide us over till it arrived. Our pharmacist even got someone to collect it from the hospital & bring it to Manchester for us. If your hosp doesn't have it, you could try rining the children's wards of other hospitals to see if they have any. Good luck xx

  • Thanks everyone, I have tried all local and not so local hospitals, pharmacists and reps of company that supply it with no luck. :(

  • Have you spoken to your dietitian? They might be able to advise an alternative that you can use until stocks are available again. I know another family having the same problem :(

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