My Little Pie

My Little Pie

Monday, 18 November 2013

Offically FPIES

I know everyone is really interested to hear how we went at PMH and i'm sorry it's taken so long to write this post. We didn't get back home till late last night and i only just have a spare minute now while the girls are both sleeping to sit down and write about it.

Our appointment went well. Most things seemed to be in our favour too which was awesome! We found parking really close which we weren't expecting. It made us half an hour early for our appointment! We went for a walk first but then got into our appointment after only 10 minutes of waiting! We were a bit in shock expecting everything to take ages! The only thing that wasn't in our favour was waiting for Iyla's formula at the PMH pharmacy. That took over an hour so we didn't end up getting out of there till after 4pm!!

The allergist we saw was really nice and i pretty much just told her Iyla's life story. She confirmed FPIES. Especially after her reaction to the oats a few weeks ago. So for now her diagnosis is acute FPIES to oats (which means vomiting reaction within 2-4hrs after ingestion) and chronic reaction to dairy (which means delayed build up reaction over a few weeks with random vomiting/screaming/diarrhoea episodes.) We know there are more foods that cause problems but because she hasn't had anything else orally they are 'unofficial'. We are just going to keep Iyla away from the ones she seemed to react to worst through my breast milk until she is at least 18 months.

She also has to go on neocate formula as we had already guessed. I've started that slowly today. It tastes disgusting so it will take a bit to get her used to the taste. For this week i'll mix 30ml of neocate to 90ml of her allerpro formula and then slowly add more neocate and less allerpro until it's all neocate. I am hoping and praying she will tolerate the neocate ok. It's very common to have reaction type symptoms for the first week as their bodies get used to it and also flush out the other things she has been reacting to. So it will probably be a rough week.

Once she is at baseline with the neocate she has to stay on that only for 6 weeks. Then with the help of the same dietician who helped us with Abbey we will slowly start introducing foods. We are going to start off with the foods Abbey tolerated the best. So pumpkin will be our first. I'm so nervous about this stage, but really hoping we can at least find a few foods she is able to tolerate. I'm also hoping we don't have too many accidental exposures to foods we know she is allergic to. If we can keep her away from them it will make life so much easier. But with how sensitive Iyla is, a slip up will be extremely easy.

Thanks to everyone for their thoughts, prayers and messages. Again i'm blown away by your support!!

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