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!

Yay to a happy baby!

As difficult and devastating as the decision was I have given up breastfeeding. Last week Monday i took Iyla to the chiro and he tested every single possible allergy he had in his NAET kit. The only things that tested bad were rice, oats (which we already knew and i wasn't eating) and a very mild allergy to eggs. He didn't think the egg allergy could be causing the bad reactions that she was having. There are still lots of foods of course that she could be reacting to that he doesn't have in his kit. But we just can't figure them out and i couldn't handle seeing my little girl in so much pain all the time. The rest of the family has been suffering too. Connor was crying every day at kindy, he was wetting his bed more often and even had a few accidents at kindy. He was playing up so badly at home because he was missing out on much needed attention and he was getting very angry every time Iyla was screaming. Abbey had become a crying mess. Everything was a big deal and i think she spent almost all day every day crying about something. She was also having lots of trouble sleeping and was crying till 9-10pm before finally falling asleep and she was also waking up screaming hysterically multiple times a night. I was also finding everything very difficult. Iyla had a health nurse check up last week Tuesday and i had to answer a post natal depression test. I scored 14 when you should score 9 or lower. I already knew that i would score high before doing the test. Lots of mornings i would be in tears already before getting out of bed because i was dreading the day so much, and when Iyla woke up for a feed i would have panic attacks not knowing how i was going to cope with the next 2-3hrs hours of screaming. I knew that it was only lack of sleep and being unable to cope that was causing me to feel like this and that if things got easier i would feel fine again. So for the good of everyone, i knew putting Iyla on formula was the only answer.

It has been a week now and we have a different baby! The first day it took till late afternoon before she stopped all her screaming and was much calmer. That night she slept a nice long 5 hour stretch! Hurray!! The next day she was mostly happy, but was having a very hard time sleeping. She did an explosive green mucusy poo and was extremely spewy which i put down to still having my milk in her system. That night she barely slept and spent 2hrs screaming non stop and doing lots of projectile vomits. The next day she was miserable. I was so scared that she was reacting to the goats milk formula. When Reuben got home from work we quickly did the allergy test but that was fine...thankfully!!! The only other thing it could have been was infacol which i was putting in her bottle to 'help with her spewing and gassiness.' That tested bad so i stopped it right away. Within 12 hours she was back to being happy and since then she has been amazing! She only spits up a little bit and only right after a feed and not hours later, it is much easier to get her burps up, she is sleeping like a champ and is very happy during her awake time. I can also tell that she is finally putting on some weight too! At her health nurse visit she had only put on 500grams since birth and was on the 8th percentile. Our family is lots happier now too. Connor and Abbey are starting to go back to their old selves and i feel like a new women! I'm getting some much needed sleep with Iyla usually only waking me once a night and i can cope with the other kids now too.

Now lets just hope and pray that things continue like this for a few months. I am expecting some problems when we start her on solids. But that is way away still. So i'm just going to enjoy my calm and content little baby while i can. :)

I also want to thank everyone for there support. The phone calls, prayers, meals, messages and love helped me get through a rough 6 weeks.

We are reliving our nightmare all over again!

It has been such a long time since my last post, but it seems like we are back in the world of allergies and more then likely FPIES all over again.

Abbey is doing great and still eating basically everything with no problems. The only foods she still has issues with are fruits like berries, grapes and melons. Her reactions are very mild though and really only cause some unsettled sleep, mild spit up and terrible behaviour.

We have added to our family though and on the 27th of June, I gave birth to another beautiful little girl. We named her Iyla Mae and are very much in love. She is just gorgeous! The poor little thing is suffering though. Already from 5 days old i started noticing her poo changing from the black newborn poo to green and it wasn't the normal dark green poo that babies can have as the black goes away. It was neon green. I knew then that things weren't looking good. As the days past, her poo started to fill with mucus and she was miserable! She was also spewing HEAPS! We were struggling to get 3 hours of sleep a night and the screaming was becoming crazy. At a week and a half old i took her to see my chiro to begin the NAET treatment that had cured Abbey. We worked out that she was allergic to amino acids. Exactly the same as Abbey. The chiro did his treatment and sent us on our way. We both expected it to work right away. Less then a week later things hadn't improved so we were back. He did the treatment again and again it didn't work. My chiro said that it probably wasn't working because i was breastfeeding and Iyla was still being exposed to amino acids through my milk. Every food has amino acids in it so it was impossible for me to cut out foods. After treatment it is recommended to avoid the allergen for 24hours. I was becoming desperate for the treatment to hurry up and work so before Iyla's next appointment with the chiro i bought some goats milk formula for her. This worked well with Abbey at first so after doing the muscle testing to see if she was allergic to it (she wasn't!) i fed her formula for 2 days. Then she had her appointment and for another day i fed her formula. She improved dramatically! her sleep improved, her screaming improved, her spewing improved, it was amazing. But i was also desperate to breastfeed. 24 hours after her NAET treatment the muscle test was showing that she was no longer allergic to amino acids. Yay!! I was so excited! I was going to be able to breastfeed and Iyla was going to be cured!

My excitement was short lived though. 3 days later she had a horrible reaction. Inconsolable screaming. Projectile vomiting and for 3 days after mucus filled diarrhoea. We worked out that the reaction was more then likely from rice which i had eaten for dinner the night before (which makes me certain Iyla has FPIES as rice is one of the most common triggers.) We haven't had another chiro appointment yet but i'm desperate for our one coming up on Monday. We have been trying to do the treatment ourselves with rice but it isn't working. I have cut out rice in my diet but she is still randomly reacting to things that we can't figure out. She is doing about 3-6 huge projectile vomits a day, she is barely ever happy. Her day consists of feeding, screaming for 1-3 hours and sleeping. Her poo is also randomly full of mucus. She is sleeping better at night time though which i am incredibly thankful for!

I really hope we can work out what she is all reacting to separately to the amino acids. Abbey's main issue was amino acids too but once that was cured we still had to work on all her worst allergies separately. If there are too many foods Iyla is allergic to, i will quit breastfeeding as i can't put her through all this pain any longer. If there are only a few foods i'll try cut them out of my diet until we can get them treated and hopefully cured. I so badly don't want to give up breastfeeding, but if i have to for some sanity and a baby that isn't in pain then i'll do it. I really want to wait until i know for sure what i'm up against though before giving it up when i might hopefully only have to cut out a few foods.

We were desperately hoping my entire pregnancy that our baby wouldn't have to suffer from FPIES. But here we are again. At least we know what we are dealing with this time. It definitely makes it easier. We have a plan and although it isn't working how we hoped we are still very optimistic that NAET will eventually work for Iyla. We are sure that eventually she will be cured and hopefully a much happier baby. In the meantime we just have to suffer the hours of screaming and sleepless nights.

My beautiful little darling