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.

Trialing another weird and wonderful chiro treatment

Although Iyla is doing better lately she is still having mild reactions to who knows what. I took her back to the chiro so he could do some more NAET treatment on her and she is still badly allergic to dairy, rice and oats and mildly allergic to eggs. He treated her again for these things but as yet we are unsure if it has worked. So far in the past it hasn't for some weird reason. He also told me about another treatment we could try. It's called Inergetix CoRe and it's even weirder then NAET in my opinion. But if NAET worked so well with Abbey and Reuben (it has cured Reuben of his all year round hayfever) then why not try something else. It's not going to hurt and if it gets my little girl better i'll be one happy mummy!
Ok so this is how it works- I gave the chiro one of Iyla's nail clippings and he puts it into a special computer that can somehow check through her DNA and list all her allergies. Then he puts all her body information into a magnetic bracelet which she wears and somehow it is meant to clear her body of the allergies. Yes i told you it was weird. Well I went back to him today to pick up the bracelet and although he couldn't remember everything she was allergic to he said the list was long. Strangely at the top of the list was allergies to dust and pollen. She does sneeze quite a lot, but don't all babies? I remember Connor and Abbey sneezing all the time in the first few months too. I asked if if it was at all possible for dust or pollen to cause vomiting and diarrhoea but he has no idea so that doesn't help me much. But anyway she is wearing the bracelet around her ankle now and she needs to keep it on for 4 weeks and then we will do the process again and see if any of her allergies are cleared. Here is a link to come more information about the Inergetix CoRe - if you're interested.

Super duper sensitive!!

So although Iyla is doing fantastic on goats milk formula she is still having lots of random mild reactions. We aren't really sure how these are happening but we are guessing that just us touching her dummy after eating, or kissing her is causing them. Awhile ago i kissed her after eating rice for dinner and we had a terrible night of screaming, spewing and green mucousy diarrhoea. It's pretty crazy really!
Last night was another REALLY bad night. I was a bit shocked as i have been so careful with everything. I wash my hands after eating, i make sure i wash her bottles separate from the other dishes, i try not to touch the part of her dummy that goes into her mouth and i haven't kissed her on the lips in weeks. But i guess a tiny slip up is easy, and it could also have been from one of the kids touching her or her dummy.
I'm really hoping that this insane sensitivity will get better as she gets older and her stomach matures a little. It's so hard to have to watch everything that goes near her every second of the day. And when she starts to become mobile it will become a whole different ball game. It's also making me dread starting solids even more. If she gets so sick from the tiniest trace of food, i don't want to know how she is going to react to a mouthful of it. Eeeekkk! But i'll have to try not think about that for now. It's still awhile away. Mind you time is flying so she'll be 6 months before we know it!