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.

Another rough few weeks

We have had some more issues with Iyla over the past few weeks. She seems to be having reaction after reaction. She has reacted to homebrand wheat biscuits (after we found out they have soy in them) so it's back to vita brits. She also reacted to the compounded paracetamol we got for her. So frustrating to still not have something to help her with teething pain and fevers. After talking to the pharmacist they confirmed that no food products were used to make her paracetamol and it seems it's just the paracetamol itself she is allergic to. Vanilla essence is another thing she reacted to. I added 1 teaspoon to a cake i made for her and it was a huge no go. I've since made the same cake again but replaced the vanilla essence for golden syrup. It's a huge hit! She also reacted to yeast after Reuben really wanted to try make her bread. I really need to get onto trying sourdough! And last but not least she reacted to a tiny piece of apple Abbey dropped on the floor. That made for 2 awful sleepless nights and an unending amount of poo! She is lots happier today, although still off most food and drink.

I'm sure you can all understand this has left me pretty exhausted. I'm seriously hoping for a few weeks reaction free so I can catch up with sleep and housework, and also not have to listen to crying almost all day long. I have been coping mostly ok, but the last few days have been extra rough. I seem to get to a point that it all gets too much and i find it hard to do anything but the bare necessities. I know if things keep improving i'll be back to my normal self in a few days. But my kids and husband need to be patient with me. Thankfully Reuben has been amazing and listens to all my complaining and gives me a much needed break when he gets home from work. Connor and Abbey seem to sense when things aren't going so well and they play up big time. I work hard to still pay enough attention to them but they always seem to get extra clingy when Iyla isn't well. I guess her crying gets on their nerves too. 

Hopefully when things have settled down some more we can start another trial. But i'm not going to push it right now. We all need a bit of a break.

Avocado = SAFE!

Even though we are only on day 5 of the avocado trial i've classed it as a pass as Iyla has had no problems what so ever and usually by day 5 we at least see some issues starting to arise if there are going to be any. We are quite surprised about this pass. It is common knowledge in the FPIES world that banana and avocado often go hand in hand reaction wise. I was a little worried about starting the trial because we know Iyla's reaction to banana is pretty bad, but the muscle test said it was fine and i've been a bit desperate for an oil to cook Iyla's food with. Avocado oil is very expensive but as least we have something now. It will make her pancakes a little easier to cook and i can roast things now too. Yay!!

Here is a picture of Iyla's dinner tonight. Looking like a very 'normal' dinner! Slow cooked lamb with gravy made from the juices, chips and some broccoli mixed with potato. She hasn't eaten it yet but i'm sure she'll love it! :)

More ups and downs

I haven't written for awhile and quite a bit has happened. Our whole family came down with a horrible flu that gave us 40 degree Celsius fevers. Panadol was needed every 4-6 hours to keep it down. Of course we already knew that Iyla was allergic to Panadol and at first we tried the suppository ones which worked but still caused mild reflux issues. We coped with that ok but then it stopped working and didn't bring down her fever at all so we had to give her oral Panadol. This caused reflux, diarrhoea and sleep problems, we didn't have a choice though but to give it to her. I decided that i really needed to get her some compounded Panadol without any flavours, additives or preservatives. I called up a pharmacy in Perth as there isn't one here and got a 6 month supply for a crazy $45 plus $10 postage. But it's best to have some on hand just in case. I'm hoping now that we have something that can help ease her reaction pain now too.

She has had a few reactions lately too. One quite bad one about a week ago that involved a lot of screaming! I'm not really used to that anymore! It was horrible!

On Friday she got into my bag of M&M's and ate at least a handful before i saw her. I was freaking out she would react badly but she surprised us. She was happy all day and just had a little bit of reflux. That night she slept through the night! Yesterday she stank the entire house out with her poo though!! It was putrid and runny and full of mucous! Only one though so that also was surprising.

Even with all this going on she has passed another food!! Watermelon is now a safe food! I've been trialing it for a week and she hasn't had a single problem. 7 safe foods now!! It's so exciting!! 

Good and bad

It's been such a crazy few weeks. Thankfully Iyla has completely improved after her antibiotics reaction. She has had a few mild reactions since then after family gatherings following the sudden death of Reuben's Aunty and Uncle on the Malaysia 17 flight. Of course we wanted to be with family in this horrible time but with people and food everywhere it's hard to keep Iyla away from it. She doesn't like being held anymore and just wants to explore. But the reactions weren't too bad, just a few vomits, restless nights, some diarrhoea and grumpiness.

Throughout these reactions we still managed to successfully finish a strawberry trial which Iyla has passed with flying colours!! It's very exciting to add another fruit to her diet. Of course she loves them! I am busy making her strawberry sorbet today for something different. I still haven't managed to find time to try out the potato yeast. But i will eventually. Now we have to decide what to try next. We are thinking another meat so i'll do some research into what meat would be more easily tolerated. 

Back to the Malaysia tragedy, i just wanted to say that i continue to pray for every single family member, friend and work colleague who has lost someone. I hope that they can all find comfort in God's love.

Getting impatient!!

I am getting so eager to trail a new food with Iyla. It's been weeks since we have been able to! Reactions and sickness have been non stop. Right now we don't really know what is going on with her. The past week she has been really really grumpy (unless we are out), she has had random diarrhoea that isn't mucousy but is very acidy, runny, green (could be the broccoli she eats), and burns her poor bottom instantly. The other day she threw up twice. Once a huge one and the next just a big regurgitation of her dinner. Then randomly she'll be constipated for a day. I'm so confused! Could also be teething i guess. She has two that are close to cutting through. But the constant grumpiness, everything is a huge drama, i want mum to hold me all the time and random hysterical screaming fits seem a bit dramatic for teething. She has never done this with her other teeth and the ones coming through aren't molars.I don't want to start a new trial now when i don't know if there is a reason for her behaviour and poo problems.It will just confuse things even more. I need some patience though!!

We thought after her reaction to antibiotics that she had lost honeydew melon as a safe food. I fed her some and exactly 2hrs later she woke up screaming hysterically. She screamed non stop for 2hrs when i finally gave her a bath to try help with the obvious tummy pains. It helped and she crashed out in bed after that. When Reuben came home from work though we did the muscle test with the melon and it was fine so the next day i bravely gave her a little bit again. She was perfectly FINE!! I was so happy! The next day i found an apple core on the floor behind the kids chairs (Grrrr! Just can't seem to teach Connor and Abbey to put them in the bin after they have finished them!!) so i'm guessing that is what caused the reaction.

Onto some exciting news! I got my hair cut today and got talking to the hairdresser about Iyla and her very limited foods. She told me that you can make yeast out of potato and then use that to make bread. I did some googling and found this website potato yeast. I can't wait to try it out! Another form of food would be awesome!! Almost as good as a new food ;).

My poor baby :(

Iyla managed...just...to tolerate the antibiotics for 5 days. She was pretty miserable with horrible diarrhoea and a badly burnt bottom and was barely eating, but we were surviving. On the night of the 5th day she cried in her sleep all night long. She didn't actually wake up but she was so unsettled. The next morning i was changing her nappy when i saw that there were smears of blood all through the mucous in her poop. Also along with that there was a piece of corn in her nappy (not sure how she got that). I'm guessing the bit of corn just tipped her stomach over the edge and it wasn't coping with anything anymore. That whole day she pooped blood and was MISERABLE! It was awful. After loads of screaming late in the afternoon and evening we decided not to give her anymore antibiotics. Hopefully the 6 days she got have been enough to fully fight off her infection. The next day was also miserable. Her dietician suggested that she needs some gut rest so we are keeping her on formula mainly with only a few bites of foods during the day for now. She has been totally off her bottles though and it's been a real struggle to get her to drink. Last night at 9pm she amazingly drank 2 full bottles one after the other and then slept through the night so that was hugely incouraging!! Today there was no more blood but still runny mucous filled and HORRID smelling poo. I'm sure i'll never forget the stench of reaction poo! I'm hoping she is fully on the mend soon so that we can continue trialing foods and hopefully find some more for her.

Antibiotics

As many of you are already aware Iyla is on antibiotics for severe bronchitis. After over a week of random high fevers i decided to take Iyla to see a doctor this past Saturday. We were told she needed to take antibiotics to stop the bronchitis from turning into pneumonia. I'm very thankful we caught it in time. We were very scared to give her antibiotics after our experience with Abbey. We are on day 4 with Iyla now and thankfully our prayers have been answered and she isn't reacting to them too badly. She is miserable most of the day, has awful diarrhoea, has some reflux and is basically off all her food but it's bearable. She is still sleeping well at night which is giving me the strength to deal with her during the day. She just needs lots of extra cuddles. There are still another 4 days to go so we are praying hard the symptoms wont build up any worse. Thankfully the antibiotics are doing their job and her fever is gone. Her chest is still very rattly and although she isn't coughing too much when she does it is heartbreaking to listen to. It sounds so painful. Please continue to pray for a full recovery for her. 

Over the past few weeks...

Things haven't been going so great for Iyla for the past couple of weeks. I haven't written about it yet as there was all too much excitement around her birthday.

It all started last Monday when i came home from doing my grocery shopping and decided to go to the toilet before i put the food away. I came back to find Iyla happily munching on a banana. She had bitten right through the peel and was sucking out the inside. She had managed to get quite a bit too. It was time for her nap soon after this so i put her to bed. She woke up 1.5hrs later (exactly 2hrs after eating the banana) screaming like she was being murdered. I went into her room and she had vomited ALL through her bed. I cleaned her up and changed her clothes, only to have her projectile vomit everywhere again. Thankfully we were in the laundry and feeling the spew come i held her away from me and she only vomited on the floor. After this she was extremely tired, clammy and in a lot of pain. I sat holding her on the couch for 1.5hrs while she groaned, moaned, cried, pulled her legs up, curled up into a ball and really didn't know what to do with herself. After this she fell into a deep sleep in my arms but i managed to transfer her into her bed. I had to wake her 2hrs later to go pick Connor up from school. She was feeling better when she woke up but refused to eat or drink and was still very pale.

She had been on her second day of a fish trial but from advise from the dietician we decided to stop the trial for a week and give her gut some time to rest and also make sure this bad reaction wouldn't cause her to lose any of her safe foods.

The next day she was MISERABLE!!! I was surprised she hadn't gotten diarrhoea yet but by that afternoon she was actually severely constipated (this can be another reaction symptom and seems to become an issue around bubs first birthday. We had the same problem with Abbey) Her poo, although hard was still coming out with clumps of mucous.

We had a doctors appointment to get a new script for Iyla's formula and i had to see a new doctor as our usual doctor is away on maternity leave. This doctor had never heard of FPIES so it was good to be able to educate someone else on the condition. He also sent Iyla to get blood tests. I don't know if you remember when she was 4 months she got blood tests to check her vitamin D and iron which were both really low. It was meant to be followed up 3 months later but we never got around to it. Poor miss was already miserable and then we had to do that. It was hard to watch but she was very brave. We got the results in the mail yesterday and her vitamin D is now borderline but her iron is still low. Looks like we have to trial some foods that are high in iron. 

By her birthday Iyla was better reaction wise. But then had caught the dreaded flu. She had a low grade fever, horrible cough and runny nose. We had some sleepless nights due to all her coughing.

Once she was over the flu she found a chip on the floor that one of the kids must have dropped during dinner the night before. Although she is ok with potato she does not tolerate oil very well. This is weird to me as oil has no protein. But obviously there is something in it that she can't tolerate. Abbey was always fine with oils. It makes it really hard with cooking her food. We have tried olive oil and canola oil without success and we muscle tested sunflower oil which tests pretty bad too.

Since eating the chip (which was on Saturday) She just hasn't been herself. She is barely drinking bottles, is really grumpy and is barely sleeping during the day (thankfully not too bad over night!) Her poo isn't diarrhoea but still runny, full of mucous and instant butt burning. She is lots happier today and had a more solid poo this morning. Hopefully this is the end of all the problems and we can start another food in a few days. We have decided to skip fish for the time being and trial spinach instead to build up her iron levels.

One whole year!!!

Tomorrow the not so little anymore miss Iyla turns ONE!!! It has been another crazy year in our lives. One with many downs but also many ups.

This time last year i was still pregnant and looking forward to the day i would get induced so that my pregnancy would be over and i could start to feel a little better. I was very over feeling sick from high blood pressure and also the constant debilitating migraines. I was also very excited to meet my little girl!! We knew that we had a high chance of allergies or FPIES again but we never expected that the NAET treatment that worked for Abbey wouldn't work for Iyla. We really had our hopes up that even if there was issues they could be addressed and we would be able to enjoy a 'normal' baby.

Our first night in hospital was already rough. She screamed until 5am. She was already spitting up lots and very gassy and was constantly gagging and choking. It was scary but the midwives told me it was normal. I hoped they were right and it wasn't a sign of things to come. Things didn't really improve and when she was 5 days old and pooped neon green poo full of mucous i knew. I remember my heart wanting to break into pieces. Not again!! But then i thought that i would take her straight to my chiro to try NAET with her and that hopefully we could get everything sorted out and i would be able to continue breastfeeding and she wouldn't have to deal with the allergies. We tried for a good few months without any success. It was so hard. especially after having all that hope. We were all shattered.

But now as i look back over the past year, yes it has been extremely difficult, yes it has tested and tried us and more ways then we could have thought possible and yes we have often wanted to run away from it all. But there have been so many good times too. Iyla truly is an amazingly beautiful little girl. When she isn't reacting she is the easiest, happiest and most easy going baby you could come across. She brings so much joy to our lives and so much love to our family. I know i couldn't imagine life without her. I hate watching all the pain she goes through but each food trial that is a pass is so exciting!! We are truly blessed!! I look forward to the day she outgrows FPIES but up until then we will do our best to stay strong for her.

I want to also thank everyone for following our story so far and for all the thoughts and prayers. It helps so much not to feel alone and isolated. 

Here is a photo of her enjoying CAKE!! yes CAKE for her photo shoot! It's made from self raising flour, her formula and a little sugar. (Sugar is protein free so an automatic pass) 

Another pass and the start of a new trial

I thought i better write an update to let you all know that honeydew melon is also a pass for the gorgeous little miss Iyla! 4 safe foods now!! So exciting! :)

Yesterday we started a potato trial. Again she has horrible mucous filled poo and she only slept half an hour all day today but apart from that she was mainly happy. We'll just have to see how she goes and hope it's like the other foods and this is just an adjustment period.

Over the past few weeks i have had so many comments from people thinking she has suddenly outgrown all her allergies and that is why she is having so many passes with foods now. I thought i would clarify that NO she has not yet outgrown all her allergies but it is quite possible that because she is nearing her first birthday that her stomach has matured just that little bit more and that is why it is finally starting to tolerate some foods. Which is GREAT! Don't get me wrong, but life with these allergies is nowhere near over yet and it is still a daily struggle to keep her from picking up crumbs and a guessing game when she does have a reaction to what could have caused it. Even with all these passes she has still had reactions in the past few weeks too. It's definitely not over yet!

I did some test baking today and used the recipe for the pancakes i've been making her (flour, neocate formula and sugar) to make a cupcake and i'm excited to say it worked!!! I will use pure icing sugar (it can't be regular as they add corn to it to stop it from clumping up) and water to make some icing and then she can have a special treat on her birthday. It's going to be very exciting seeing her enjoy something so yummy!! :)

Honeydew melon trial

We are on day 6 of a honeydew melon trial and it seems to be going well. The start was confusing again but that just seems to be her thing lately. The symptoms were all over the place with some really bad days and some really good days so we have pushed through. A few more days and we can hopefully call it a pass!! All these passes are getting so exciting!! :)
Here is a couple of photos of her eating lunch today. She had pancakes and a piece of melon and was scoffing herself!! :)

Wheat is SAFE!!!

I'm excited to say that wheat is another food we can add to Iyla's safe list!! It was another very confusing trial with lots of random symptoms. There was random big vomits, some sleepless nights, a few gross mucousy poos, a few days of extreme grumpiness and some days of lots of spit up. But with it being all over the place and her having perfectly happy and normal days in between we pushed through slowly and all of a sudden all the problems went away and she has been eating full servings of vita-brits for the last two days and this morning i made her pancakes for breakfast! She LOVED them!!
Wheat opens up so many possibilities!! I'm so excited!!

Lamb = SAFE!!!

I'm ready to do a happy dance!! Iyla has her second safe food!! So exciting! We are on day 8 of lamb today and she hasn't had any reaction to it what so ever! We usually do 10 day trials but because there are no issues i increased the amount she was eating sooner then i normally would and she is having full servings. She is loving it! I gave her a diced piece just cooked in the oven yesterday instead of pureed and she thought that was great to chew on.

Tomorrow i have decided to start a wheat trial. Her dietician wants us to trial quinoa but after doing the muscle testing for wheat and it being fine i think we'll try that first. If it doesn't work we'll trial quinoa instead. 

 Enjoying using the lamb to help with teething

A new trial finally!!!

It's been a long wait to finally be able to start a new food trial with Iyla. She has been reaction free for 6 days now and is back to her happy gorgeous amazing little self. We waited a little longer still as Abbey had a stomach bug over the weekend and we wanted to make sure Iyla wasn't going to get it and then confuse the trial. But it seems that no one else in the family is going to get it thankfully. Lets hope it's not one of those ones that takes a long time to pass from person to person.
But anyway i fed Iyla a little bit of pureed boiled grass-fed lamb mixed with her broccoli this morning. I don't think she even realised it was any different. It's been 2hrs now and so far all is good (except refusing her morning bottle) so we will see how it pans out. Will be so nice if we can add another food to her diet!

Reaction after reaction...

Over the past 2 weeks little miss Iyla has been getting into everything and finding all sorts of things to eat. Including grass, toilet freshener, more spiders, dinner dropped on the floor, her cousins juice and more. It has resulted in a reaction every few days. Usually not bad but enough to cause serious tummy pains, horrible reflux, sleepless nights and diarrhoea. The diarrhoea after her toilet freshener was the nicest smelling poop i've ever experienced :).
Because of all these reactions we are having to put a hold on her lamb trial. Hopefully we can manage to keep her reaction free for a few days so we can actually start. Thankfully broccoli is still safe and she is still loving it!

Pear = FAIL

I bought some organic pears (not officially classed as organic but not sprayed) from the farmers market on Saturday and we decided to start a new food trial with Iyla right away. Like usual she loved it! But things haven't gone very well. There has been lots of screaming, not much sleep, spit up and horrible poo the last two days and today she completely refused to eat it. She put it in her mouth but screamed hysterically until i scraped every single bit out. We aren't giving her anymore.

We are giving her a few days break to get back to normal and then we are going to trial lamb.

Having to refuse her food is getting harder and harder the older she gets though. She wants what we eat so badly now and those pleading eyes are heartbreaking. Hoping and praying we can find more safe foods soon!!

Growing out of the severe sensitivity???

Yesterday was one of those days where Iyla managed to find every bit of food on the floor. In the morning she ate a tiny piece of a biscuit and a cheerio. We were expecting a reaction, especially from the cheerio but nothing happened. She was her happy self all morning. Then at about 3.30pm she somehow managed to find a twistie. We thought for sure something bad would happen seeing as rice and corn are the main ingredients and two of her worst foods. But apart from a couple of random screaming episodes in the evening she seemed ok. We did have a terrible night where she barely slept and screamed most of the night but no vomiting and so far this morning no diarrhoea (she is very unhappy this morning though and hasn't let me put her down). We are hopeful that this means as she is getting older her stomach isn't quite as sensitive as it was when she was a tiny baby. We are sure she is still allergic to these foods but she probably just needs more of them to cause a bad reaction.

Broccoli is still going great too. She is eating full servings with no problems what so ever. So exciting to say she has a SAFE food!! Hurray!!!  :) :) :) 

 She makes such a mess! Broccoli everywhere!

Spiders???

We have a new food to add to Iyla's safe list...spiders :). Just kidding. But she ate a big black spider yesterday and didn't have a reaction to it. So gross but kind of funny at the same time.

On the topic of food, she is still going well with broccoli. Her poo is pretty much normal now and she is sleeping well and super happy. It is looking like it may be a pass!! We usually do 10 day trials before classing it a pass and today we are on day 10 but she is still only eating 4tsp a day. So i'll start increasing that again and see how she copes. I fed her when we had dinner tonight instead of first thing in the morning and she loved joining in with us :).

Broccoli

Iyla is on day 6 of broccoli and things seem to be improving and not getting worse. YAY!! The first few days there was some sleep trouble and grumpiness but that went away and she is sleeping great and is really happy all day long. There has been lots of explosive, mucousy, instant butt burning poop. But as the days go by this seems to be getting better. Yesterday and today her poo has still been horrible but not half as much mucous. It actually seems like her body may be building up a tolerance to broccoli which is awesome! Iyla is loving it too and gets so excited when i put her in her highchair to be fed. We are sticking to 4tsp a day until her poo is normal again then we will increase slowly. Hoping and praying it continues to go well!!!

 Miss broccoli face!

Cauliflower = FAIL

Although it was only a mild reaction, we aren't going to try cauliflower again. The reaction was the same as last time. It was a bit over 2hrs this time when she vomiting but it was bigger then the first one. All over her carseat. She wasn't really unhappy, but obviously not her usual happy self. She went off bottles again for 8hrs but the worst was over within 4hrs. She vomited again in her sleep during the night but didn't do any screaming. She didn't get any rash this time but i think that is because last time she rubbed a lot of it over her face. This time she ate it all.

Now for a few days break and then to try figure out what food to try next.

Mild reaction, now retrialing

On Friday Iyla seemed to have a mild reaction to the cauliflower. I fed her early in the morning when we all had breakfast and just under 2hrs later she did a small vomit and started crying and nothing made her happy. She also got red around her eyes and the skin was slightly swollen. We had to take Connor to school and she vomited again in the car on the way home. But then fell asleep and was much happier when she woke up. That night she screamed herself to sleep in my arms and woke up 3 times during the night screaming. The next morning she did one horrible poo. Our dietician wanted us to give her a few days break and then retrial just to make sure it really was the cauliflower and not something she may have picked up off the floor. I gave her 1/4 of a teaspoon at 12.30 today so we'll see what happens in two hours time.

Cauliflower trial

So this morning I decided it was time to start feeding Iyla some cauliflower. Like usual she started with 1/4 of a teaspoon. She LOVED it! It was so cute and really really hard for me not to feed her more. She was really happy all day but did do a bit of screaming this evening and lots of painful refluxy burps. We'll see how she goes. Please pray her body wont reject this food!!

Teeth torture!

Teething has been causing some major drama in this household over the last few days. Iyla is cutting her two middle top teeth and with random fevers, and lots of random screaming and some very late nights she is making us wish they would just hurry up!! We are ready to start a new food as her drinking is back to normal, she has gained her weight back and her poop is also normal. But we need to wait for these teeth so that we don't confuse the pain from that with a possible mild/build up type reaction. Our plan for the next food is to try cauliflower. We have a list of foods to try first that are most popular passes with kids with FPIES. A vegetable is what the dietician wants us to try next, so we got all the vegetables on that list and did the muscle testing with them. Out of tomato, carrot, spinach, broccoli and cauliflower the last three on the list tested good. We thought cauliflower would be the nicest tasting so will go with that first. Praying hard that she will tolerate it! I'll update when we start.

Back to square one...sigh

Since Iyla's reaction two Sunday's ago her gut still isn't completely healed. She is happier and sleeping better thankfully but she is still doing random mucousy poos and even just a tiny suck on an apple caused reflux, lots of spit up and trouble sleeping. So it seems we are back to no safe foods for now. Iyla has also lost 300grams and it is still a struggle to get her to drink much. It is getting better but we are only managing to get her to drink 600-800ml in a 24hr period. Not really enough when she isn't eating anything. 

The plan now is to give her a full 2 weeks of gut rest and then trial a vegetable and leave the apple and pear for now. Hopefully we can keep her away from food on the floor during this time so we can all have a few enjoyable weeks.

Sleepless nights SUCK!!

Just when you think life is pretty good and things are cruising along nicely Iyla has another reaction and we are back to square one.
Sunday morning we started feeding her pear and Sunday night she had a pretty bad reaction with lots of vomiting and not much sleep. I don't think it was the pear though, it was too late after feeding her for her to have had such a bad reaction. I'm guessing she must have picked up something off the floor. I really hate not knowing what it was, especially seeing how badly she reacted to it. As far as i know none of her worst foods were eaten by anyone that day so obviously she has another one.
 
Since Sunday night we have barely managed to get Iyla to drink any formula or eat any food. Yesterday got a bit stressful when she went more then 15hrs without anything at all!! We ended up having to get very forceful and hold her down to force fluids into her. It was pretty horrible but we really wanted to avoid a trip to the hospital, having a drip put in would be worse. Over a few hours we managed to get her to drink 160ml of formula. Then last night when i woke her for a dream feed she drank 240ml. I was so happy to get her finally drinking something again. 

We still had another horrible night of screaming though so over the past 3 nights i have probably only gotten 6-7hrs sleep all up. I was sick with a horrible cold just before Iyla's reaction and the coughing and sore throat kept me awake for a few nights too. I really don't know how i coped with only a few hours of sleep a night for 8 months when Abbey was a baby. I am so exhausted now just from a week of it! I'm really hoping for a decent sleep tonight. Iyla is drinking properly again so that is a good sign that she is starting to feel better.

We will start trialing pear again when Iyla has a few days of being completely back to her happy self.

Some good news!

It is so exciting to post some good news. Iyla passed her Neocate Spoon trial and since then we have also started an apple trial and are ready to call that a pass too. It's been 5 days today and we weren't very strict with how much she had as we were sure there would be no reaction and she has had pretty much as much as she wants. She is having a few issues swallowing the puree but still loves being fed, loves the taste and LOVES spitting it all over me hahaha. She has been cutting her first two teeth and because i can't give her panadol or teething gel for the pain i have been giving her cold raw apple to chew and suck on. She thinks this is fantastic and can't get enough. It is the most amazing thing watching her eat! The enjoyment on her little face is priceless.

Over the past few weeks Iyla has still had a few reactions. One was my fault when i got a bit too confident and let her suck on a piece of banana one day. (It get so difficult not being able to feed her when she looks at me longingly when i eat!) The look of complete and utter delight on her face at the taste wasn't worth watching her in agony later that night or getting covered in vomit.
Another milder reaction happened while we were away for the long weekend. We aren't sure what it was from but knew she had been chewing on something. Just couldn't figure out what it was. We barely got any sleep that night but thankfully the screaming wasn't too much and she didn't even wake Beck or Zenon up who were sharing our cabin. For 2 days later she had a few explosive nappies a day and she completely lost her appetite. It was a struggle to get 400ml into her a day. Thankfully she is back to her normal self again.

Even though things are mainly going well, we still never know what will happen in a day. I have to stay on top of my cleaning so we avoid accidental reactions and i wont feed her again with something we aren't trialing. Sometimes i just feel a bit crazy and this whole thing isn't real when she doesn't have a reaction for awhile. She is such a normal happy baby otherwise. I hate how food is so dangerous!

So far so good!

We have been feeding Iyla Neocate Spoon on and off for a week now and so far so good. The first day she did some big vomits but was happy so the next day i gave her a break as it was also Abbey's birthday and i didn't want to ruin her day. Since that day though things have been pretty good. She had a slight increase in reflux and sleeping issues but that seems to be going back to normal again. Today i fed her 2 teaspoons and she is finally getting the hang of actually eating and not just spitting it all out. She was so excited to eat it. We haven't finished the trial yet but with things actually improving instead of worsening i'm very hopeful! Even though it's not 'proper food' it's still exciting!!

Quick update

Hi everyone,
It has been awhile since i have updated you all but nothing has really changed. Iyla hasn't been well the past few weeks. She has had random on and off fevers and a bad cold. She still isn't 100% so we haven't started any food.
I have received some tins of Neocate Spoon from a fellow FPIES mum to trial so if Iyla is finally better on Monday we will be starting that.
She has barely been drinking anything lately but has thankfully put back on the weight she lost with her diarrhoea plus an extra 300 grams. She now weighs 8.1kg. Nicely average for her age! She is extremely tall (73cm) so she is a tall and skinny little miss. So different from Connor and Abbey. Here is a recent picture of her. She is such a cutie! Love her to bits!

Ear infection, onion, reaction, poo, poo and more poo

Last Saturday Iyla was completely miserable. She screamed almost the whole afternoon, hysterically! She was constantly pulling on her ear and it was quite red. After Abbey reacted to so many antibiotics for ear infections when she was a baby we found out that onion juice is an amazing natural cure and worked awesome for her. We decided to see if putting some in Iyla's ear would make her happier. Within a minute she was back to her happy normal self and actually fell asleep!! The next day she was mainly happy, but by night time was a crying mess again. I used the onion again and within minutes she was back to herself. Monday things began to go downhill. She refused to sleep, she cried and cried and cried no matter what i did. Onion in her ear did nothing. Monday night she barely slept and Tuesday she was even more miserable. Because she wasn't spewing i thought it couldn't be a reaction and i thought maybe the onion hadn't worked for the infection. I took her to the doctor but her ears were completely clear and nothing else appeared to be wrong. I didn't bother with anymore onion knowing her ears were now fine. Late that afternoon had been 24hrs since her last onion dose and she was finally happier again!!! The only thing now was that diarrhoea had started. But as long as she was happy, i was happy.
Now it is Friday and the diarrhoea hasn't let up. Sometimes all she is pooing out is big blobs of mucus and she has a terrible nappy rash. Poor poppet. We are hoping that it ends soon. She is still mostly happy apart from when her rash is hurting her.

Who would have thought though that it was possible to react to something through an ear?? It baffled me but it's really the only thing that makes sense. I guess we will know for sure next time she has an ear infection. I would still choose the onion over antibiotics.

Today i also had this thought. It was a thought that got me really excited. What if Iyla isn't allergic to apple, but because i cooked it in a pan that has cooked other food she is reacting to that instead. So we decided to use our trusty muscle testing again. We tested a plain raw apple which we have tested before and it tested good. Again it tested good. We tested the apple i cooked for her and it tested bad. We then held the pan against her and tested and that tested REALLY bad! I don't want to get my hopes up! But i am getting them up! I am going to buy a new pan that i will only use for cooking Iyla's food and we are going to retest apple! How awesome would it be if she can tolerate it!? Hoping and praying this is the case!!!

First solids- apple

So on Monday we started trailing apple with Iyla. Her very first food! It was exciting and a bit daunting actually putting food in her mouth for once instead of frantically trying to get it out. The first two days she wasn't that keen on the apple. She just spat it all out. But today, day 3, she ate the whole lot (she was up to 2 teaspoons) and she loved it. All morning she was happy as. Then she woke up from a nap at 1.30pm screaming blue murder. I thought she might just be hungry as she hadn't finished any of her bottles today. She still didn't want to drink it though. For the rest of the afternoon she cried, and whined and was extremely tired but wouldn't/couldn't sleep. She spewed a little but it wasn't too bad. I did notice lots of wet burps which made her scream and lots of putrid farts.

When Reuben came home from work i decided to do that muscle testing the chiro taught us to see if she was allergic to apple now. Monday and yesterday the muscle test tested good. But this afternoon my arm dropped. I did the NAET treatment myself straight away so now have to wait 24hrs to see if it's worked. Hoping and praying because this allergy isn't too bad (yet) that the treatment will actually work.