Today is national FPIES day. I thought i would do a post on what it's like for our family living with FPIES. I'm not doing this post to complain about how hard my life is, but more as information about how things can change so quickly and how we never ever know how a day will pan out. FPIES needs more awareness, it is becoming more common (and/or more diagnosed) and i'm sure lots of FPIES parents like me feel misunderstood, that they are over reacting and that some people think they are crazy.
We are very lucky that we have lived through FPIES twice before. It has definitely helped us understand what we are dealing with and where to go this time. We see the mistakes we made with the other girls and have tried to not make them again. With Abbey we trialed foods too fast. We didn't wait long enough after reactions for her gut to heal a bit before trialing new foods and this caused reactions to foods she possibly could have tolerated had we waited and given her a good break. It is more than likely the reason why she only had pumpkin as a safe food until 18 months. Halle has 15 safe foods. She did have 17 but we recently lost 2. Cashews and blueberries.
I think losing safe foods is the most frustrating aspect of living with these sort of allergies!! Both cashews and blueberries have been safe right from the start! They are ones i have eaten myself since day one of my restricted diet and some of the first foods Halle started eating back at 10 months. I personally don't understand how her body can just start rejecting things it was previously fine with, but i do know it only ever happens after a different reaction to a new food or a known trigger food. Something is set off in her little body and it decides to attack whatever it feels like.
Another thing we need to really watch is when she is or has been sick or when she is teething. This does something to her immune system and if we trial new foods in these times we have a much higher chance of things failing. How can we always know if she is teething? It's basically constant at the moment! I don't like the thought of not trialing foods until she stops teething as that won't be till she is over two. I don't want to live on such a restricted diet myself for so much longer and i also know it's not great for either of us to be eating the same foods every single day, day in and day out. There are so many foods we can't eat and we are missing out on vital nutrients that we both need. So we will still trial foods, it is just a slow slow process and we need to be prepared for the set backs if they happen.
We also need to be SUPER careful with dropping foods Halle is allergic to on the floor because one crumb can be enough to set off a reaction. This is so hard for the other kids! There are so many rules around food in this house! We have a robo vacuum cleaner so that i can keep the floor as crumb free as possible. Trying to keep on it myself was just a constant job i don't have time for!
A reaction for Halle is dependent on the food eaten and how much of it she eats. Egg causes her most severe reaction but sometimes i actually prefer her getting egg then some other foods that have 'milder' reactions. This may sound weird but let me explain. When Halle eats egg it takes 2-4 hours for her reaction to start. Then she has profuse vomiting for 1-2 hours. She will be grey and lethargic and vomit every 5-10min in this time. Once the vomiting is done she will be back to her happy little self as if nothing happened. The next day we sometimes get some diarrhoea but not always. She usually sleeps good that night.
With other reactions that don't cause the vomiting we see mood changes; crying, screaming, whining and just overall being miserable. She will fight sleep during the day and often only sleeps 15-30min stretches during the night. She gets violent bouts of hiccups that hurt her and sometimes has days where she does small little spews all the time. Depending on the reaction she gets diarrhoea or constipation. It's so awful for her and so exhausting for all of us. Halle basically needs our constant attention during this time. I hold her all day and often then she still fights me and doesn't know what she wants. Sometimes we thankfully get moments where she'll be happy to be put down and may play for a few minutes. Going out does distract her and we can visit people and she'll be mostly happy until we get home again. I love these little breaks amid the chaos! These type of reactions can last anywhere from a day to a week after eating the bad food.
Halle has also recently developed a different type of allergy. Over the past few months she has started getting itchy spots/rashes and swollen eyes from certain foods. We haven't worked them all out but we know cashews and wheat cause it. There is more but we just haven't been able to pinpoint them yet. We aren't sure why this has suddenly started happening. Abbey and Iyla never had anything of the sort and i don't think it is FPIES related. We need to get an appointment with an immunologist to get some allergy testing done and see if they show up as IgE allergies or not. (FPIES is a non IgE allergy).
So as you can see we have some pretty fun days in this house. It's not all bad though. Halle is adorable and brings so much joy to our lives. We hate seeing her suffer so much and pray daily for healing for her. We are hoping that like her sisters she begins to outgrow her allergies around the age of two. But we honestly have no idea if that will happen or not. Every child is different and Halle is definitely more complex.
Here is the list of Halle's safe foods
-Beef
-Lamb
-Carrot
-Sweet potato
-Pumpkin
-Zucchini
-Onion
-Garlic
-Cucumber
-Dates
-Banana
-Almonds
-Honey
-Coconut oil (No other coconut products!)
-Cacao
and salt pepper, olive oil and some herbs. I don't really class these as foods. They are more just added ingredients.
On a daily basis Halle (And I) eat pumpkin soup for breakfast. Snacks are things made with almonds, almond butter, coconut oil, cacao, honey and fruit. Lunch is roasted vegetables. Sometimes we also have left over roasts. Dinner for Halle is usually a mix of lamb or beef with her safe vegetables. I eat tomato soup most nights (i haven't added tomato to Halle's diet yet as she isn't too good with nightshade foods. But so far she hasn't reacted to tomato through breastfeeding.) To get as many nutrients as possible all our food is cooked in meat broth. To help keep my weight on with such a limited diet i eat lots of fat! All my snacks are loaded with coconut oil and nuts of course help, plus the fat out of the broths. Amazingly this has really helped! When i was breastfeeding Violet, i wasn't on any diet restrictions and i lost more weight then i have with Halle!
Here are some photos of Halle's new reactions
