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My son( Freddie) was given the FPIES diagnosis after 10 months of hideous sleep up every 15 mins poo pooed by the GPs as having a milk allergy back in feb as didn’t have the usual congestion or bad skin . He has all his symptoms in his tummy . It started at birth when we  both were given antibiotics for sepsis which wiped out his gut flora . He had an episode while being fed Greek yoghurt where he projectile vomited a lot and went pale and unresponsive.  (taken to hospital where a possible diagnosis of Intussusception was given although ultra sound was clear ) after seeing a gastroenterologist he has now given the diagnosis of FPIES and removed dairy,soy,egg and gluten from our diets (breastfeeding) . I’d just like to say hello to all the FPIES parents and I think you guys are doing a great job . I’m hoping to stop breastfeeding at 1 and give Freddie other milk but seem to be sick with coconut milk at the moment so we will have to see . I’m hoping the sleep gets better he’s managed to get to 1.5 hour stints now and his ear wax is a lot less than it was . He’s happier in himself during the day just still iffy at night . I’d like to say our dieticians at Sheffield children’s hospital have been brilliant and I would of been so stuck without them . Thanks for reading Tash

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Hi Tash,

Good luck with the journey- there is light at the end of the tunnel (my 5-year-old son who had a terrible case of FPIES has just about outgrown it).  I'm hoping my second baby son doesn't have it . . . we'll see . . . (the screaming episodes after peas twice exactly 4 hours after eating gives me a bit to pause about- but no other issues).

I recommend (if you can) not letting go of breastfeeding until you know you have another "milk."  We failed cow's milk, soy, coconut, almond, and Elecare at age 1 to 1.5. I ended up breastfeeding for 3 years until we found out Neocate Splash worked well.  Phew!  : ) 

-Jess

@Jess posted:

Hi Tash,

Good luck with the journey- there is light at the end of the tunnel (my 5-year-old son who had a terrible case of FPIES has just about outgrown it).  I'm hoping my second baby son doesn't have it . . . we'll see . . . (the screaming episodes after peas twice exactly 4 hours after eating gives me a bit to pause about- but no other issues).

I recommend (if you can) not letting go of breastfeeding until you know you have another "milk."  We failed cow's milk, soy, coconut, almond, and Elecare at age 1 to 1.5. I ended up breastfeeding for 3 years until we found out Neocate Splash worked well.  Phew!  : )

-Jess

Hi Jess

I’m so pleased your son has out grown FPIES . It’s a begger !! Thank you for the keep breast going advice . I will keep it up ! We can’t get neocate splash in the uk but they have neocate junior . Freddie won’t eat the normal neocate at the moment . I don’t blame him though sweet boob milk or what we think taste like seaweed 😁. He is doing ok with Almond milk in his gluten free oats in a morning which he’s not reacting to thank the lord . So hopefully if the Ko Ko super milk leads to a reaction maybe we can use the Almond milk . I’m so glad your second son seems to be ok other than the peas issues . Thank you for your message Tash x

Hi Tash,

Sounds like you are figuring it out- severe FPIES is SO hard to manage and my oldest son was often chronically ill.  (Doing great now!)

Sounds like almond milk is working (in addition to breastmilk).  I would go gradual- We tended to react to "milks" if we did too much too soon.

My son was the same way- We never tried regular Neocate.  But, he really hated Neocate Jr. (over age 1) and all of the flavors.  He loved Neocate Splash- over age 1 (wierd you can't get that in the UK).  Elecare tastes better, and a lot of FPIES kiddos could tolerate it (just not my son).  I don't think anything is as good as breastmilk (for most not all FPIES kiddos).  But after 3 years I was done!  : )

Glad you have gluten free oats as a safe food- We had no safe grains except quinoa for four years.  (Yes, that was a bit of a nightmare.)

-Jess

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