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!

We're baaack :(

It's been 4 years and 4 months since i last updated this blog!! It feels like a lifetime ago!! So much has happened in those years and our family has changed so much!

For those of you who don't know us personally, we have added 2 more gorgeous little girls to our family since my last update. Violet Hope and Halle Grace. They have added so much love and joy to our lives!!

Violet was born on the 8th of June 2017. We were richly blessed with her and she was spared the awful life of FPIES. It was such an amazing experience to have a baby that didn't have so many issues with food! She was such an easy baby! When we started solids she had some mild intolerances but we had learned of the healing properties of the GAPS diet and after 6 months on this diet she was pretty much completely healed.

Halle was born on the 26th of January this year and is now 8 months old. The first couple of weeks of her life she showed no reaction to things in my breastmilk and we were so hopeful that we would get spared FPIES again. But God obviously had a different plan for our lives. From 2 weeks of age Halle started showing signs of intolerances. She became spewy and refluxy, her poo became foul, she screamed a lot and barely slept. Right away i began cutting foods out of my diet. I was hoping it would just be a few things that were affecting her. But over a few months my list of safe foods kept dropping. Eventually i was only eating 20 different foods/ingredients. BUT we finally found a baseline!! It was so nice to have a happy baby. It has been completely worth the restrictions.

We thought we were pretty sorted when we started solids. If we could keep Halle away from the foods i wasn't eating and only feed her foods that she didn't react to through my milk we should be fine! But I was so wrong. On Thursday Halle had a severe acute FPIES reaction to egg. I have had egg in my diet for ages with no problems. Halle has also eaten egg herself 5 times before this with no reaction at all. I fed her less then 1/2 a teaspoon of some yolk from my morning boiled egg at around 7.30am. Everything was normal and she went down for her nap as usual at 8.30am. Cue the scream from Iyla 1 hour later that Halle had thrown up in her bed. I had been outside helping Violet with something and wasn't too worried as the girls love being dramatic about Halle's little spews. But when i saw her bed i knew something wasn't right. Everything was covered in vomit. 5 min later she projectile vomited again all over me. The profuse vomiting went on every 10 min for an hour and then the next hour she just threw up bile or dry retched every 10min. She also did an explosive disgusting poo in between all of that. She became very lethargic, floppy and grey and at one point unresponsive. I've never been so scared in my life. I was trying to organise getting her to hospital before she had become unresponsive and Reuben was trying to rush home from work to come with me. But thankfully by the time he got home she was starting to pick up again. There isn't much that hospital can really do, but i never want to be alone with her again when she goes into shock! It's so traumatising! It was a full blown and very typical FPIES reaction, but one we had never truly experienced before. The older girls reactions were never this severe.

These photos are about 15 min apart. The first one of her in my bed was when she was at her sickest. You can see the grey tone of her skin. The photo doesn't show how floppy she was. She was like a ragdoll. I know now that she had gone into shock. Poor bubba. The second photo was her slowly recovering. She started looking around again and wasn't completely out of it anymore. Her colour was back a bit too. Over the rest of the day she slept a lot and didn't feed much, but she was much much better. The next day the diarrhoea was awful! But other then that she was thankfully back to her happy little self. 

So as much as we hoped and prayed we wouldn't need to experience FPIES again, here we are. It's hard to understand why, but i'm putting my trust in God that he knows what his plan is in this. I'm confused and upset but we love this little girl with all our hearts and we will do everything we can to help her through the next year or so. We are so very thankful that we know so much more about gut health this time around. Although FPIES is something else and doesn't conform to anything i've really learned. So i'll continue to learn and grow and try to understand this strange condition more. In the meantime we will go veeery slow when we introduce more solids. Nothing is necessarily safe anymore. For now we are sticking to just broth to help her gut recover from her reaction. 

Happy Second Birthday Baby Girl!!

I thought that seeing as Iyla just turned 2 it really was time for another update! It's been over 2 months since the last one! Things had been going really well with Iyla. We were almost set to call her allergy free. That was until 3 weeks ago when we trialed corn...one of her last bad foods to trial. It was a build up reaction over 5 days. But we had to stop giving it to her as she was just getting sicker and sicker from it.

She was back to her happy little self a few days later and with her eating again i started giving her nutella on her sandwiches for lunch. She had, had it randomly but never more then a few times a week. We hadn't noticed any issues before but after a week of her eating it every day, her mood, sleep, poo and reflux all started going downhill. It finally clicked that i had to go back to good old cheese on her sandwiches instead.

Only a few days after that gastro hit our family with force. It's been 10 days now since Iyla had it but there hasn't been any improvement in the diarrhoea. The poo just wont stop coming! Her mood is all over the place too. She definitely isn't her normal happy little self. There are tears, screaming and tantrums most of the day. But thankfully if we are out and about she is distracted and mostly happy. I can't wait for things to go back to normal though. I'm not sure if the diarrhoea is still from the gastro or if she is reacting to something that was safe because her stomach is so messed up. We will just have to wait it out a bit longer and then decide what to do if things don't get better. I have no idea where we would start!


Here is Iyla on her birthday with her favourite present. She managed a smile even though she had just been having a complete meltdown about the fact i wanted a photo. 

I'm so excited!!

Iyla is almost 22 months and seems to be at the end of her FPIES journey! After her last bout of vomiting which thankfully turned out to be gastro, she is just passing food after food after food. We started trialing things 3 foods at a time but now we are getting braver and are giving her small amounts of most foods except her previous really bad ones. Things that we know for sure she has passed are

tomato
yeast
all oils
cucumber
peas
green beans
zucchini
passion fruit
pineapple
grapes
fish
almond
coconut
lettuce

2 times now she has had the same dinner as us which is so exciting for her and us! The first was spaghetti (i just used an organic pasta sauce) and tonight she had chicken parmigiana, chips and salad. She is also eating shop bought bread without any problems. Which is quite amazing as it has soy flour in it!
The only thing that she has eaten recently which has caused a mild reaction (up all night with tummy pains both times) was m&m's. But really what was i thinking? Definitely not the best food to feed a kid with allergies. I just couldn't resist those pleading eyes and cute little voice asking for 'more lollies.'

I'll keep you all updated as to how she continues to go but it is looking extremely promising!

BAD reaction!!

We started Iyla's next 3 foods trial on Friday and we thought it was going really well. We were trialling, almonds, spinach and cauliflower. The first two days things were great. No issues what so ever. Then yesterday she refused to eat the piece of almond slice i had made her in the morning. I didn't push it and then decided while i was making her a meatball for dinner that i would add a little bit of almond meal just to make sure she got some that day. She ate her meatball fine, she loved it. All was well until 8pm...exactly 2hrs after dinner. Then she started vomiting, which went on for about 2 hours. She got to puking bile and then finally went to sleep. She slept till 12.30am but woke up throwing up bile again twice. At 4.30am she woke up again and was thirsty. I let her have a little sip and after keeping that in for 20 min i let her just sip more water slowly over the next two hours. She was back in bed at 6.45am and then basically slept all day. She was only awake between 9.30 and 11.30. I had to wake her to pick up Connor from school but thankfully she was lots happier then. She still isn't really eating but she is drinking lots which is most important right now.

We'll wait a week before starting the spinach and cauliflower trials again but we wont bother giving almonds another go. 

I did something crazy...

Last week Monday i did something crazy...I started 3 new food trials with Iyla at the same time! I admit i was scared, but i also just want to add to her diet so badly. I figured if things went badly it wasn't too hard to cut back on two of the foods and then trial one at a time. We were extremely lucky..blessed really...that she has past all 3 of those foods!!! It's so exciting!! So now we have added sweet potato, mushrooms and pear into her diet. With pear being a previous bad food it was very exciting that she passed that one too! I wanted to try mushrooms so that i could get more flavour into her dinners. I am a little shocked still that she LOVES them and although she won't eat them raw, she will eat them after they have been fried and has happily eaten them alongside her breakfast for the past week. Sweet potato was a bit of an issue at the start as she really didn't like it. But after hiding it in her vitabrits every morning she started to get used to the taste and now i have added it to her dinner without any gagging or spitting it out. 

For this week we will just keep going with the 3 new foods and hope for no build up reactions but next week we are planning to start another 3 food trial. Hopefully we have the same results!! 

Worst few days in a long time!!

Of course with my hubby gone for 3 weeks the reactions have to start! So much for no food trails so I could avoid dealing with reactions on my own!!

It all started on Wednesday after i took her to swimming lessons at the pool for the first time. It hadn't even crossed my mind that she might react to the water until we were in the pool and she just kept swallowing it. I hoped for the best but 7hrs later we got the first poo...and it still hasn't stopped. We had a few bad nights but thankfully she has mostly been happy enough. That is until yesterday afternoon when she found the empty muffin case from one of the other kids. In it had been a banana choc chip muffin. She barely got any of the crumbs from the edge before i saw her. I wasn't too fussed as she seems to be fine with small amounts of bad food lately. She barely ate any dinner last night but that isn't necessarily a symptom. We were at my sisters for dinner and she often isn't interested in food when we are not at home. Everything seemed fine until 10.45pm when the screaming started. It didn't stop till 3.15am. Finally she fell asleep only to already be awake at 6.30am!

Today was a horrible day! So much screaming!! After two water and mucous poos she got a little happier but was very lethargic and spent most of the afternoon either laying on the floor moaning or laying on me. At 4pm the non stop screaming started again until she finally crashed at 6pm. So for those of you wondering why i wasn't in church today this is why. I am really really hoping for some more sleep tonight and a happier little girl tomorrow.

Huge improvement in oats allergy!!

1 and a half weeks ago my little climber got into the pantry, climbed up a few shelves and found a box of muesli bars. I was busy hanging up washing outside and had no idea what she was up to. When i found her she had bitten through the wrapping and eaten about 1/4 of the muesli bar. I was in sudden freak out mode. There were sooo many bad foods in that bar! Oats, rice, sultanas, apple, sunflower oil and the list goes on. Amazingly though apart from a few foul poos the next day there was no reaction. I was in shock and so confused. How could she react to such a teeny tiny amount of pumpkin just days before and then eat a few mouthfuls of her worst known foods without a single problem?? FPIES is so weird!! 

The next day i decided to be brave and fed her a little bit more of the muesli bar. I just wanted to know if it was just a fluke that there was no real reaction or if she had actually started to outgrow some of her allergies. There was still no problems apart from one mucous filled poo. Excitement started to kick in. Could this be it?? Could her body be starting to tolerate foods that previously she reacted to severely? I decided then it was time to do an oat trial. 

It's been 9 days of her having small amounts of porridge for breakfast. Things since starting have been very confusing. We have had good days and bad days, normal poo and disgusting poo, tantrums, sensory issues and some reflux. It hasn't been overly bad but even staying on 2 teaspoons hasn't improved anything. I was going to stick to it but this Mumma needs sleep. Night times (especially the last 3) have been terrible. I'm tired and over it. 

It is absolutely awesome that she has tolerated oats so well compared to what used to happen when she was a baby. But i don't think there is any point pushing it right now. I'll wait another 6 months and then give it another try. 

For the next three weeks we are having another break from trials as Reuben is away and i don't feel like dealing with any reactions on my own. I'll keep you posted on what we try next. 

Pumpkin = FAIL

I usually don't start trials at dinner time but sometimes i have this feeling Iyla will be fine with the food and then just give her some. Well last night was one of those nights where it was my own fault i was up all night with a screaming child. After her usual dinner i went to give her half a teaspoon of the pumpkin soup i made. She HATED it and spat what i thought was all of it out. I then gave her some cheese and she dropped it into a drop of the pumpkin soup that was on her highchair. Well as i'm sure you guessed she down right refused to eat that cheese even after i wiped the soup off. This is extremely out of character for Iyla. She likes most foods and you would think that pumpkin soup being so sweet would be a huge hit. And to give up her cheese like that! Anyone who knows Iyla well enough will know how obsessed she is with her cheese!

She must have ingested the tiniest bit of pumpkin and we had a pretty horrible night. There was no vomiting but lots of obvious tummy pain and reflux. Usually i would push on for another day and see if things got worse but because she isn't going to eat it anyway there is no point. We'll just add it to the bad foods list and stay away from it for now.

Ready to start foods again...

Over the past 5 weeks we haven't done any food trails as we all just wanted a break and to be able to enjoy Christmas and the start to a new year.

But it's about that time again that we start a new food. It's going to be pumpkin so we will see how that goes. Right now i have some pumpkin soup cooking on the stove with butternut pumpkin, onion, potato, carrot and homemade chicken stock. It should taste good! Hopefully Iyla thinks so too and isn't too upset that she can only have one spoon of it at the start. I'm not sure yet it i'm going to start tonight or wait till after the weekend. I can't decide what is better, having Reuben home to help me deal with it if she does have a reaction or waiting until during the week so that we can enjoy our weekend together. Hoping we get another pass anyway! Having no reaction would be awesome!!

I'm not sure if i mentioned earlier but before our break Iyla added beef to her diet. This has been really handy!

I hope this year is a fantastic year for all of you! 

Update

I'm sorry it's been such a long time since i'm updated this blog. I just keep forgetting! Things have been going great for Iyla food wise lately. On top of her recent dairy and chicken passes she has also added egg and carrot to her diet!! So exciting! It is great to see her diet expanding so much and with such awesome foods! Because of this I was starting to think that maybe she had outgrown all her allergies...that was wishful thinking!! Last Friday i gave her a small piece of apple. It wasn't such a good idea! The next day on top of being miserable from that reaction she drank some water out of a bucket that had fish in it while on a fishing trip. There was quite a few big vomits and screaming and lots of disgusting poo the next day. Then on top of that she caught a horrible flu with high fevers. It's been a long week!!

I'm looking forward to her getting better and then starting some new foods. I have no idea what to try yet but probably another vegetable.

No more neocate!

I had a phone appointment with Iyla's dietician yesterday and because Iyla can now have dairy she is allowed to start drinking cows milk instead of her neocate formula. I was a little worried that the food she can eat wont give enough nutrients without it. But she is barely drinking her formula now anyway so we are hoping she'll drink more cows milk and that she we can add foods to her diet quicker now that it seems she is tolerating things better then what she used to. 

We also have an appointment at PMH on the 27th for a check up and probably skin prick testing just to rule out any other possible allergies. 

We were supposed to start a chicken trial yesterday but the poor little miss is sick with high fevers and was vomiting last night. Hopefully this doesn't mess up her gut and cause things to go backward again.

DAIRY is SAFE!!!! Woohoo!!

There is huge excitement in this house at the moment! Iyla is no longer allergic to dairy!!! A few months back I decided I wanted to give NAET treatment a go again. I know how to do it myself so I held a bottle of milk against Iyla and did the weird massage that somehow tells the brain that the food isn’t bad. 24 hours later we muscle tested milk and it was still bad so I did the massage again. I had to do this for 3 days and then finally the test was good. Since that time Iyla has had so many reactions to other things that we haven’t had a chance to really trial dairy. But I was giving her small bites of yogurt every now and again without that causing any issues. This week she has finally been doing really well reaction wise so I have increased her dairy amount. She has been having a few spoons of yogurt daily and I’ve made her pancakes with half milk half water instead of her formula. There have been no problems at all!! I’m so excited! Dairy is HUGE!!! And now that NAET has worked for one food I’ll definitely be trying it with others in the future.

So confused, frustrated, tired and sick of FPIES!!

We have no idea what is going on with Iyla at the moment. She just isn't getting better...well we might have a good day or two here or there...but mostly she is miserable, sleeping crap, eating very little, pooing out copious amounts of mucous, then pooing out hard pebbles and randomly vomiting. Every time we start to get excited that she is getting better things go down hill again and i'm ready to scream to the world that i HATE FPIES!!! 

I'm sure everyone that see us thinks things must be going well because every time we drop Connor off at school or pick him up she is full of smiles and cute hellos for anyone walking past. I'm thankful for the fact that after the screaming in the car the whole way to school i get a few minutes of peace (until we are back in the car or home again) but i feel like she is making me look like i'm making this whole thing up. Trust me, i wish i was! I would stop 'making it up' in a heartbeat so that we could have our happy little girl back. 

We are thinking that her reaction to the soy in the homebrand wheat biscuits has messed up her gut and that it might take awhile for things to go fully back to normal. We are also wondering if it will be worth it to put her on complete gut rest for a week. That means no solid food and only formula. I'll talk to her dietician about it first and see what she thinks. Iyla will hate it and i know it will rough on us too as getting her to drink her bottles lately is a huge battle. But something needs to change before we all go completely insane.