Horrible horrible torture

Poor little miss Iyla had to have blood drawn today to test for IgE mediated allergies (these are the normal allergies like peanuts, lactose intolerance ect and should come back negative) and also to test her vitamin levels just in case something is lacking there. It was so horrible! Two nurses had to do it, one holding her down and the other drawing the blood. I got to be the good guy trying to comfort her. I wasn't very good at it though because i was trying so hard not to become a blubbering mess myself. Poor Iyla went hysterical. It was so sad.

She is doing really good on her new formula though. As you know we have slowly been introducing it adding a little more of it to each bottle every day. As the days have past over the last week we have been seeing a little bit of improvement every day. She has been happier, she has spewed less and her sleeping has been getting a lots better too. Going from waking 5+ times down to only once on Saturday night. Then yesterday we started giving her full neocate. She slept through the night last night and has been REALLY happy today and has barely spewed. She has only soaked 2 burp cloths instead of the usual 6-10 a day. After the way Abbey reacted to neocate we were sure we would be in for the same drama. But so far so good! It's very promising...but we can't get our hopes up too quickly yet. It took her 2 months to start reacting to the goats milk formula and 2 weeks to start reacting to the Allerpro one. It could still happen. But for now we will just thoroughly enjoy our happy little girl and hope and pray it continues to work for her :).

Offically FPIES

I know everyone is really interested to hear how we went at PMH and i'm sorry it's taken so long to write this post. We didn't get back home till late last night and i only just have a spare minute now while the girls are both sleeping to sit down and write about it.

Our appointment went well. Most things seemed to be in our favour too which was awesome! We found parking really close which we weren't expecting. It made us half an hour early for our appointment! We went for a walk first but then got into our appointment after only 10 minutes of waiting! We were a bit in shock expecting everything to take ages! The only thing that wasn't in our favour was waiting for Iyla's formula at the PMH pharmacy. That took over an hour so we didn't end up getting out of there till after 4pm!!

The allergist we saw was really nice and i pretty much just told her Iyla's life story. She confirmed FPIES. Especially after her reaction to the oats a few weeks ago. So for now her diagnosis is acute FPIES to oats (which means vomiting reaction within 2-4hrs after ingestion) and chronic reaction to dairy (which means delayed build up reaction over a few weeks with random vomiting/screaming/diarrhoea episodes.) We know there are more foods that cause problems but because she hasn't had anything else orally they are 'unofficial'. We are just going to keep Iyla away from the ones she seemed to react to worst through my breast milk until she is at least 18 months.

She also has to go on neocate formula as we had already guessed. I've started that slowly today. It tastes disgusting so it will take a bit to get her used to the taste. For this week i'll mix 30ml of neocate to 90ml of her allerpro formula and then slowly add more neocate and less allerpro until it's all neocate. I am hoping and praying she will tolerate the neocate ok. It's very common to have reaction type symptoms for the first week as their bodies get used to it and also flush out the other things she has been reacting to. So it will probably be a rough week.

Once she is at baseline with the neocate she has to stay on that only for 6 weeks. Then with the help of the same dietician who helped us with Abbey we will slowly start introducing foods. We are going to start off with the foods Abbey tolerated the best. So pumpkin will be our first. I'm so nervous about this stage, but really hoping we can at least find a few foods she is able to tolerate. I'm also hoping we don't have too many accidental exposures to foods we know she is allergic to. If we can keep her away from them it will make life so much easier. But with how sensitive Iyla is, a slip up will be extremely easy.

Thanks to everyone for their thoughts, prayers and messages. Again i'm blown away by your support!!

2 days to go

Tomorrow we leave for Perth for Iyla's appointment at PMH on Monday with the allergist. I'm not sure how i feel about it. I'm happy to be going to hopefully get some help and support for the little miss, but it also brings back memories of being there with Abbey and being made to look like a complete idiot. I guess from their point of view i would have looked pretty crazy. Coming with claims i had a daughter who got extremely sick from all sorts of food and then them feeding her huge amounts of those foods and her not having a single reaction. How was I to know that the NAET treatment we had just started trying had already worked? They probably thought i was a total hypochondriac. Hopefully they don't think i'm one this time. Honestly, even though i often feel like i'm crazy myself, this whole thing is very real.

Over the last few days things with Iyla haven't been very good. She still smiles and is starting to laugh a little bit more but over all she is pretty miserable. She had one really good day with pretty much no vomiting, but the next day it was back in full force and has been like that ever since. Her sleeping is also terrible. During the day she only catnaps 20-40min at a time and she is waking me 3-6 times at night screaming. She is barely drinking anything. Today she had half a bottle at 7.45am and then refused another bottle until 3.30pm. 8 hours without anything to drink is just a little too long during the day. Another thing that has been happening a lot since starting this new formula is some weird and scary breathing. She has had it a few times with reactions in the past but now it happens at least once a day and sometimes multiple times. It lasts anywhere from 10min to a few hours. It doesn't matter if she is awake or sleeping, it just sounds a little worse when she is sleeping because she is breathing deeper. I've been doing some research and it seems to be a form of croup that is caused by allergies and reflux. I have added a video so you can hear it. I'll have to talk to her allergist, but all these symptoms to me sound like this new formula is also not working for her. So frustrating!!!

PMH here we come

It has been 5 days now since we started Iyla on her new formula. Things have been up and down but i think overall she is doing ok. The first day she did good. She tried to refuse the bottle a few times but with a bit of persistence she drank it. The second day was rough. She only slept 10-30min at a time, she was sooo grumpy, she was spitting up like crazy and it wasn't even milk coming up. It was clear like water but slimy/mucousy. I'm guessing it was stomach acid. It hurt her a lot to come up. Her poo was gross, but that is normal with hydrolysed formula so as long as there is no mucus in it i'll try not stress about it. As the days have passed she has been happier. She is still having random screaming fits but they aren't lasting too long thankfully. She is still having troubles sleeping during the day but night times she is sleeping through the night. Yay!! Her spewing is still bad and she has vomited yellow bile a few times. But i guess as long as she is happy i shouldn't worry.

Today she had a reaction which was pretty awful. I didn't wash my hands after cleaning up the kids breakfast and they had, had porridge. I didn't realise i had some oats stuck on my hand, but i was wiping a little bit of spew off Iyla's mouth and of course the oats got on her lip. I was trying to wipe it off, but she was throwing herself around and managed to get it in her mouth and swallow it. 2.5hrs later she woke up in a pool of vomit. Her screaming wasn't too bad if i was holding her thankfully, but she was still miserable. Over the course of the day she vomited 3 more times and soaked herself and me in spitup. She barely slept all day and kept refusing her bottles. She seemed to be feeling lots better by bedtime, so hopefully she sleeps good now.

Ok so now onto PMH. I got a letter in the mail today with an appointment date for the 18th of this month!! Can't believe how soon it is! I'm really hoping the allergist will be able to rule out any other issues and help us as we move forward.

Our worst nightmare has come true

I remember so clearly the day i found out i was pregnant with Iyla (just over a year ago now) and the first thing i thought was 'What if this baby has FPIES too?' Throughout my pregnancy i comforted myself with the thought that the chiro cured Abbey so quickly, surely he would be able to cure the baby too if it came to that. Deep in the back of my mind though the worry was continually there, what if NAET didn't work? What if the baby was worse the Abbey? I tried not to let myself think these things because i was determined to stay positive.
Then Iyla was born and she already so quickly started showing symptoms of allergies. Off to the chiro we went with such high hopes. A few days ago now those hopes came crashing down when the chiro sadly told me that he didnt know what else to do and nothing he was trying was working. Totally devastated is the best was to describe how i felt. My thoughts went straight back to what it was like dealing with Abbey and watching her in so much pain all the time and i just wanted to cry. This was not supposed to happen, this was not the way it was meant to be.

The past few days i have really been struggling with the fear of what is to come when Iyla starts solids. I am trying to give my fear and worry to God as i know He is the only one who is going to be able to help me through this again. He got me through it once so i know He'll be there for me again. But being human like i am it is hard to let go of these feelings and trust everything will be ok. I was also diagnosed with Post Natal Depression this week so the negative thinking is hard to get away from.

Onto a more positive note, my doctor is being fantastic with what Iyla is going through. In her own time she has been researching FPIES and found an allergist in Perth who deals with lots of FPIES kids. She called her yesterday and told her all of Iyla's history. The allergist has suggested i take Iyla off goats milk formula and try her on Karicare Aptimal Allerpro. She is wondering if all Iyla's random reactions are actually from her formula and not just us touching her mouth or dummy. We have a referral to see this allergist now and will hopefully get in to see her sometime before Christmas. They also want to do testing to make sure we rule out everything else that could possibly be wrong with her before we officially say it's FPIES again.

So it's been an interesting week. It will be interesting to see how everything turns out in the coming months. I will keep you all posted on how Iyla goes with her new formula. She is still pretty miserable from having her immunisations 3 days ago so i'm not going to start until she is hopefully feeling better.

Abbey had a reaction today :(

It has been such a long time since she has had one, it was kind of a shock. We went out yesterday for a bit of an in-law family get together. She must have eaten something there that either she hasn't eaten before or something that she is still allergic to. I was busy with Iyla most of the day and there was food all over the place so she could have gotten anything.
Yesterday afternoon she already started with extreme tantrums. Apparently she screamed for 45min after i left for church because the hug i had given her before i left wasn't good enough. Over night she kept waking up screaming that she had a sore tummy. She was also burping like crazy and kept regurgitating her food. There was nothing i could do but cuddle her until she was ready to go back to sleep. Then do that over and over again. This morning she vomited 4 times. Not big ones but she was most upset about them. She cried so much this morning, constantly doubling over and holding her stomach as tight as she could. It was pretty heartbreaking to watch and not be able to do anything. She kept looking at me with these pleading eyes like i needed to help her.
She slowly improved as the afternoon went on, with less crying and less stomach cramps. Thankfully!!! Hopefully she will sleep ok tonight and the diarrhoea i'm expecting tomorrow wont be too bad.

Still having reactions

Since having this inergetix CoRe anklet on Iyla we haven't really need any improvement. For the past two weeks we have been on holidays and Iyla was fantastic. But the entire time she had runny mucusy green poo. Although she was still really happy, on one of the days she had an hour of screaming in obvious pain and she was pretty spewy. It took until a few days before we left for me to think that maybe it was sunscreen that was causing the problem. I had only put some on her a couple of times but with me having it on my skin and holding her she could have easily licked it off. I became extremely careful and didn't let her lay her head against my shoulder without a cloth being in between and after applying sunscreen i washed my hands thoroughly. Within a day her poo was back to normal. Problem solved :).
When we were on our way home though (we drove 10.5hrs one day and 4hrs the second day) she had another horrible reaction. It was awful dealing with it in the car. She screamed for 6 hours with only a few short sleeps in between. She soaked her clothes in poo and spew so we had to stop lots to change her. It was the worst trip ever! 
So sadly there hasn't been a magical cure. I am going to take Iyla back to the chiro again next week if i can get an appointment so we will see what he says.