Friday, 10 April 2015

Embracing the Allergies

This week is Allergy Awareness Week and as a result, I thought I would write about our experience with FPIES.

 When Emma was quite new we thought we would try out some Cow and Gate formula.  Breastfeeding just wasn't quite working and we needed to get her weight up - so we figured a top up would be the best thing to do.  She vomited.  Not a little spit up - but a proper vomit.  I remember coming downstairs and I found B sleeping on the floor with her and she was wrapped in a towel.

We tried formula again a few months later (November), and this time, we nearly sent her to A and E.  After severe, projectile vomiting Emma went limp and unresponsive.   Little did we know that our little one was allergic to cow's milk protein.  

Being the stubborn person that I am, I declared that that was the final straw for formula. Why would I give my baby something which caused that reaction?  After quite a bit of arguing and kicking off with our GP, we ended up with Nutramigen, an amino acid based formula for babies with milk protein allergies.  I thought it was the end of our problems as she started to fill out and progress well with the formula.  

And then we began weaning.   Acting on advice, we started weaning her using the Gina Ford puree method.  What is the first thing you are meant to give babies?  Baby Rice.  She didn't like it.  Next?  Something easy.  Sweet Potato.  Carrot.  Things were ok for awhile, but as I increased the volume of puree, she suddenly started reacting in exactly the same to certain foods as she did the formula.  The projectile vomiting, the limp and unresponsive state.  

What's a mother to do?  Any time I went to the doctor I was told I just needed to try foods and see how she reacted.  I hated that idea - why force her to eat something if I know she can't handle it?  My instincts told me that Emma wasn't ready for solids just yet.  We could wait - she was getting everything she needed from the Nutramigen.   She LIKED food - she liked the taste and texture.  So we would give her food to play with - I just wasn't interested in forcing her to eat it.

This all went along fine until Nursery suggested that she needed cereal of some sort.  They suggested Baby Porridge - sure enough, five hours later, she vomited in her car seat and started choking.

Enough was enough.  I wanted an answer.  The Doctors, Dieticians and Health Visitors couldn't help me, so I had to find the answer myself - with the help of my dad and some other contacts we discovered FPIES.

FPIES - Food Protein-Induced Enterocolitis Syndrome.  Her reaction is textbook:

According the FPIES website:
"The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea.  The child may appear very ill and sleepy (lethargic), and may become pale or blue.  When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock."

And just like that - I felt better.  It's an answer. I found my way to the FPIES UK site and the support I got from them has been amazing.  The site has so much information on it.  The group have been my guardian angels over the past few weeks.  Any questions I have had - morning or night, someone would always take the time to offer advice or share ideas.  We are all parents who are afraid to feed out kids - we don't know what food is safe and the only way to find out is trying - and sometimes failing.  

They told me to get two lists:  Safe foods and trigger foods.  Try a teaspoon of a new food - see what happens.  Even a small reaction could become greater with a greater volume.  I've been using the Food Survey from other families to try and figure out what to try for our food trials.

There was a wealth of information available suddenly - not medical information - but information from PARENTS.  Parents who have have kids who suffer from FPIES and just want to help out other mums and dads.  For them, I am incredibly thankful.

Emma's lists
(and we are so lucky compared to some other little ones)

Melon, Pear, Pea, Courgette, Banana, Blueberries, Cauliflower, Broccoli, Apple, Butternut Squash, Prune, Cantaloupe, Green Bean, Chickpeas, Sweetcorn, Red Pepper, Quinoa, Kale, Cinnamon, Clove

Milk, Oats, Rice, Carrot, Sweet Potato, Potato, Parsnip, Cod, Cornflour

Is it scary?  Yes.  It's also frustrating, stressful and heartbreaking.  It's not fair.

But the good news is there is help.  I am so grateful for the FPIES community as they are helping me embrace food and feed my baby with confidence.  

The moral of this story:  Trust your instincts.  
I knew something wasn't right and I'm glad I fought it.

The FPIES Awareness video from last year circulated the support group the other day.  Please watch and listen.


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