Amazing improvement!

 I'm so terrible at writing here so i thought it was about time i did an update again. 

We have had amazing improvement with her food and overall health. When i posted my last post we had run out of homeopathic zinc for her and her naturopath suspected that was the cause of things going backward. I've learned that zinc is essential for closing the leaks in the gut lining and no matter how much gut healing you try to do. If you are zinc deficient it won't help. Within 2.5wks of starting it again we managed to add back in all the newest safes she had lost. Plus we have added more foods!! 

Most exciting is chicken, dairy and EGG!! Egg is especially huge!! After being so allergic to it, it still seems almost bad to feed it to her. But she's loving it! Omelette is her new favourite food. 

Another massive improvement we've had is in sleep!! For the past 3wks she has mostly been sleeping through the night! Crazy seeing as before that i was still often only getting 3-4hrs of sleep from her. I'm loving it. And the funniest thing is even though she is sleeping so much better at night she's having longer day sleeps too. She's finally catching up on 21 months of barely any sleep!! Woohoo! 

We are so thankful to God for these improvements and pray they continue. It's been a lovely breath of fresh air and just what we've all desperately needed. 

Rough few weeks

The last few weeks have been very trying for all of us. Halle had another acute FPIES reaction to an unknown food. After that she just couldn't get better. The pooing, crying, not sleeping, spots and puffy eyes just kept on going. We had a few good days here and there but overall it hasn't been much fun. We've had to cut 4 more foods out of her diet as her body decided she was now allergic to them too 😔. She now only has 9 safe foods/ingredients. It is such a limited amount and she is really noticing now that she isn't eating the same as me anymore. She gets so upset and often throws big tantrums when she can't have what i'm eating. It is the most heartbreaking thing. I feel so sad for her. She now lives off only 3 veggies (carrot, sweet potato and pumpkin) 2 fruits (banana and dates) 2 meats (lamb and beef) and honey and coconut oil. Getting creative just isn't really an option anymore. So she eats the same things day in and day out.

Thankfully the last two days we have seen she is finally lots happier. She has even slept through the night 2 nights in a row!! Amazing!! She is still pretty lethargic all the time though and spends a lot of time sitting on my lap just chilling. I do love the snuggles 😃. We found out yesterday after testing from a naturopath i took her to that she is severely anaemic and that is probably why she doesn't have much energy. Hopefully the iron supplement we are going to try she will tolerate and we can see some improvement for her. She is also deficient in lots of other things which makes sense. We are waiting for more results so we can know where to go from here.

We are all very emotionally drained and exhausted from the constant brain power it has taken to try work out what has been making her so sick. I'm praying Halle gets a bit of a break from reactions for awhile so we can all recharge and her gut can try heal again from all the damage.

No reaction to egg!!

I am totally in shock still but so thankful to God for answering many many prayers. Yesterday Halle accidentally got some egg and ate it. She didn't have any reaction! Nothing! She's been her happy little self since! I really wasn't expecting her to grow out of her acute FPIES trigger so young. It is a dream come true!

We aren't planning on giving her more egg just yet as it's still very highly likely that she could now be just intolerant to it and like with many other foods it builds up as a reaction over a few days of eating it. We aren't ready to risk it yet with such a dangerous food. We have many other foods that are more important to try add to her diet first and we don't want to risk sending things backward again by messing up her gut.

We know she hasn't outgrown all her allergies yet as we have just had to stop feeding her almonds too. So right now she is living off red meat, broth, her safe veg, coconut oil, honey, homemade jelly, dates, bananas and breastmilk. We are forced into doing the GAPS intro stage one diet. But i think it will be good for her. We will follow the GAPS protocol as we introduce more foods too just so she gets the most healing done for her.   

We are also in the process of doing a gentle heavy metal cleanse for both of us. I have an amalgam filling that has been slowly chipping since i was pregnant with Halle. The effects of mercury can be devastating and can definitely affect gut health badly. I know mercury can pass into breastmilk so Halle is constantly exposed to it. We are hoping that by doing this detox her body will be better able to heal. I am also planning on weaning her soon. After that is done we will start the journey of adding more foods again. We are praying this time we have better success and we can add more foods to her diet. I am extremely excited to stop breastfeeding and start eating more too!! Also once i've stopped feeding her i can get my tooth sorted out.

National FPIES day- What it's like for us to live with FPIES

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

Food Trial Frustrations

After having gone through these food trials before with two other kids, you would think i would remember how it always goes. It's so frustrating! I need to stop putting goals up on how many new foods i am wanting to add and when that will happen. I always end up disappointed.

Halle does have a decent amount of safe foods now. Almost everything that i'm eating. But we haven't been able to add anything new for the past 2 months. Once she was eating the same as me the aim was to start trials with her which she would hopefully pass and then i could start eating them too. But we got as far as trialing cauliflower which was a BIG FAT fail. That took her awhile to get over, then she had another FPIES reaction to an accidental exposure to egg and after that she got really sick with high fevers for a whole week. She is better now but sleep still hasn't been great and her poo is still very mucousy. So we need to keep on waiting until these get better before we can even think of trying a new food.

How slow the process is, is what i find the hardest. I really need to learn some more patience. I just hope we get to find a new safe food soon. There could be a whole range out there we have no idea about because we haven't tried them yet. If only we could just try the right ones first so we don't get so many set backs all the time!!

On a positive note i have been getting a bit more creative with the safe foods we do have. I make my own cashew milk at home that i can use in COFFEE!! I have missed coffee so much. I don't make it every day as it uses a lot of cashews which aren't the cheapest food out there, but i love my treat a few times a week. I have also made cashew cheesecake and cashew yogurt. Amazing what you can do with such a simple little nut! I also invented some safe biscuits and a slice we can eat. It's very nice having a bit more variety.

She loves her real food. 

Roast veggies and Cleavers hotdogs
yum yum

A whole year has passed!!

Two weeks ago Halle Grace turned ONE!! I love first birthdays. I love looking back on photos and seeing how much she has grown! It's seriously crazy how small they start out to how big they become in such a short amount of time. I'm as proud of Halle and all her accomplishments as i am of myself and Reuben for making it through the year! Halle is one tough little girl! Thinking back to everything she has endured this year, it's just amazing how well she coped. The flu, 2 bouts of pneumonia, hand foot and mouth and FPIES. She got through it all with very minimal treatment and no medications as she was allergic to everything we tried. Our bodies really are incredible at healing. I am also super proud to have made it a whole year on such a restricted diet. It has been one of the hardest things i have done but i'm so thankful i could continue to give Halle the best nutrition she needed. As she has gotten older we are seeing that she isn't as sensitive through my milk anymore and i have had sneaky tastes of 'naughty' foods without reactions. So hopefully over this year i can start adding more foods and enjoy some more variety.

So where are we at with foods for Halle since my last post? She has 7 definite safe foods!! Pumpkin, carrot, sweet potato, zucchini, almonds beef and lamb! Over the past week after an appointment with a dietitian we have taken a leap and introduced 6 new foods; cashews, banana, dates, blueberries, honey and coconut oil! I wasn't going to add that many at once but it just sort of happened because i started giving her tastes of my snacks without her reacting so i just kept going. So far so good. She did a huge vomit in the middle of the night last night but is otherwise fine so i'll just keep monitoring her. At our appointment we realised she had lost some weight and hadn't gained anything in over 2 months so our goal was to start feeding her up. She now eats pumpkin soup for breakfast, some bits of fruit and bliss balls i made her for snacks, roast vegetables for lunch and a mix of meat with vegetables for dinners. All her main meals are cooked in broth with lots of fat and I add coconut oil to basically everything to help with the weight and also the constipation. That is her biggest issue now since adding more foods. She is loving it though! And i am loving feeding her.

Since my last post she has had a couple more acute reactions to egg. They both haven't been as severe as her first reaction and the time period seems to have gone from 2 hours after eating it to 4 hours later. It's still crazy how the tiniest crumb of anything with egg in it can cause so much vomiting! We need to be very vigilant to keep any snacks with egg in them out of her reach and the floor of the house needs to be vacuumed a lot to keep her safe. It's why Reuben bought me a robo vacuum cleaner. It's been so helpful! 😀 I love it!!

For the more recent future we will continue doing what we are doing. I am hoping to get Halle eating all the same foods as me soon so meal times are a bit easier. Then after we have gotten there i will start introducing foods to my diet to see if she reacts to them still. We are praying she has at least outgrown some of her allergies/intolerances.

10 months old!

Wow Halle is 10 months old!!! Where has the time gone!? Life has continued to be one roller coaster after another. Up until 9 months she was a very sick little girl. She suffered hand foot and mouth disease, another pretty bad FPIES reaction and ended up in hospital with pneumonia for the second time in her short little life. Thankfully since then she has been sickness free! So a whole month without even as much as a runny nose. That has been so nice!!

When she had her second FPIES reaction i decided to cut all the food i was feeding her for awhile. Her poor gut was a mess! The poo was insane and she needed a break so we could try get her back to baseline. Since then i have been in contact with an amazing lady who was the one who got me started on the whole gut healing journey our family started about 4 years ago now. She also had kids with FPIES and she used the GAPS diet to help heal them. She gave me some awesome insight into the unpredictability of FPIES and how sickness, teething and anything detoxing can trigger FPIES flare ups. It is all to do with inflammation in the body and the body not coping with the food proteins and rejecting them causing the reactions. If the body isn't fighting inflammation too much then more foods can be tolerated. I definitely see this is true with how Halle can have safe foods (herself or ones that i'm eating and she can tolerate through breast milk) and then after a reaction to something else, or when she's sick she will lose them. Sometimes i can add them back after a break but not always. I saw the same with Abbey and Iyla, but back then i never understood what was going on! FPIES is such a mystery and so confusing!! It goes against the basic understanding of most allergies. After my chat to this knowledgeable lady i realised that i needed to slow down on feeding Halle. Her body struggles to even cope with the fiber in vegetables, it's all too much on her gut. So now it is all about healing and reducing inflammation. Slow cooked broth and meats are amazing at healing the lining of the gut, so that is what we have started with. For about a month now that is all i have been feeding Halle. Boring i know, but if it will help in the long run i am all for it. Soon i am going to VERY slowly start introducing carrot juice. Carrot juice is known for it's anti inflammatory properties. I really hope she will tolerate it! Then after she turns one I'll start adding in vegetables that i know she doesn't react to through breast milk. They will be slow cooked in broth to help them be easier to digest.

Over the past month, most of the time things were great with Halle. She was such a happy little girl again. Life was easy and i was actually getting back into a nice routine and even keeping the house clean! hahahaha. But without warning things have been pretty rough again lately. She cut her 5th tooth and true to FPIES form, this messed with her gut again. She also found some crumbs of things on the floor and has had a mild reactions which have caused screaming, gross poo, fighting every single sleep, waking a million times a night and just not being her normal happy self. I have also lost a few foods that i used to be able to eat. It's so hard to become even more restricted. But i know without a doubt that breast milk is the very best for her right now. I have gotten this far and she mostly does amazing, i can't even play with the idea of formula that she more than likely wont even tolerate. She is putting on weight, i am able to maintain my weight and she is getting enough to eat. It's a lot of work and there are definitely days i wish i could give up, but i know i can do this!

I'm really hoping things settle down with Halle again soon and we can avoid more reactions. But with her starting to be on the move i have a feeling we are only at the start of the hardest part of this journey. She isn't crawling yet thankfully but she is learning to bum shuffle and can move short distances. It's amazing the things she finds on the floor even after i've just vacuumed!