My Little Pie

My Little Pie

Friday, 27 December 2013

Good days!! Yay!!

We have finally been blessed with some good days. 5 in a row actually! It's been so nice! Apart from one terrible night and one slightly fussy day she has been happy, smiley, barely spewing, sleeping great and just being awesome. Such a nice way to spend the holidays especially. She is such an easy baby when she is feeling well.

She also turned 6 months old today! Where has the time gone? I love her so very much and i can't imagine my life without her. Even with all the hard times she is so worth it. Hopefully the next 6 months wont be as difficult as the past ones.

Sunday, 22 December 2013


It seems that there is just one thing after another lately and it has really been getting me down. I'm finding it hard to stay positive. So i've decided i need to write down some of the positives in life. I know that i am greatly blessed!

- I have God in my life to help me get through all the hard times!
- I have 3 beautiful children!
- Iyla's and Abbey's allergies are not going to last forever!
- We have good days where Iyla isn't in any pain!
- Iyla has slept through the night for 4 nights in a row!
- It is summer and we have beautiful weather!
- Reuben is on holidays so i'm not dealing with it all on my own for a few weeks!
- I have amazing family and friends!
- I am apart of a very caring, loving and supportive church community!

Reflux meds # 2 = FAIL!!!

Some people already know this but i thought i better update my blog anyway. On Thursday, just after i wrote my last post my doctor called and said she would like us to try another reflux med with Iyla. I couldn't get hold of the dietician still so we were kind of on our own. My doctor read out the ingredients over the phone and it didn't sound like there was any food product names in there that i knew so i thought we might as well try it. She wanted us to try Zantac. I picked it up that day and decided to try it on Friday. I had to give her 1ml twice a day. I gave her the first dose in the morning. She spat most of it out. For the whole morning she was really happy. Then 4 hours after she had the meds she started spewing. She did small spews constantly for 2 hours and screamed A LOT!! At the end of the two hours she did a massive spew but was thankfully happier after that. On Saturday morning she did a disgusting poo that exploded out of her nappy and soaked through her clothes. It was also full of mucus. Since that fail i have learned that Zantac is made using corn syrup. Wish i had figured that out before giving it to her...sigh.

Wednesday, 18 December 2013

Reflux meds = FAIL

I've been meaning to update this for a few days but i've been crazy busy and haven't had time. As my title tells you, the reflux meds were a big fat fail. So frustrating!! The first 2 days were good, she was lots happier, was sleeping better but was spewing HEAPS more. This already made me a little nervous but it seemed to be helping for the acidic pain of her spew coming back up. The 3rd day, she was terribly grumpy and sleep became a huge issue. Every sleep she needed to be rocked (well really shaken) to sleep. I was getting more suss by then but decided to give it one more try. Bad decision! On Monday she screamed almost all day long. Like a hysterical, in agony, someone please help me kind of scream. It was awful!! She was constantly pulling her legs up, wriggling and squirming in pain and there was nothing really that helped. I tried a bath but she wasn't even happy in there. Every now and again a tummy massage worked for a few minutes but then the pain just came back again. Getting her to sleep was a huge mission, but thankfully once asleep she was so exhausted she managed to stay asleep for 2 hours. It was a well needed break. Her spewing also became insane. It was one projectile after another, all over me, all over her, all over the house. She only did one poo a day during the trail but those were light green, so runny they just instantly got soaked into her nappy and there were globs of mucus through it. We stopped giving the meds and within 12 hours she was back to her normal little self. Poor little miss.

Now i just need to wait until i can get in contact with the dietician. She isn't replying to my emails so i think she may already be on holidays. Looks like things will be at a stand still up until the middle of next month. I'm in no hurry to start solids so now i just hope we can keep her reaction free for a few weeks. My nazi floor cleaning has started as Iyla is getting very ready to start crawling. She manages to get her self all over the place. I'm getting a playpen from a friend (which i keep forgetting to pick up) so hopefully having her more contained will make things easier.

I also want to take the time to thank everyone for helping me through this difficult time. I haven't been coping very well but to see how everyone is so willing to make me meals and give me words of encouragement and support mean everything.
A special thanks goes out to my amazing sister! You are the best! And my mum who is always a willing ear to listen to my complaining and help out in whatever way she can. Love you both a ton!

Tuesday, 10 December 2013

Just another update

It's been a bit of a hard past week, each day has slowly been getting worse. Iyla isn't reacting to her formula (unless it's building up to that...hoping and praying it's not!!) but she has pretty bad reflux from it. She is still very spewy and now hates laying down as it seems to cause her a lot of pain. You can just imagine how this is affecting her sleep. During the day she is taking hours to get to sleep once she is tired. She constantly squirms, screams and has to burp and spew. It's very tiring and extremely frustrating. Even when we hold her she has trouble falling to sleep, although it doesn't take as long. It's just a restart of the battle once she is put back in bed. I have raised her mattress to a 40 degree angle but it's not helping much. She is also only cat napping. Sleeping only 20-40min at a time. Randomly she will have good days and then sleep 1-2hrs at a time but that has only happened three times in the past week. At night it is still a huge battle to get her to sleep but once asleep she isn't waking too often. Usually 1-3 times a night screaming because she needs to burp or spew. She is probably just so exhausted from not much sleep during the day that she just passes out. Thankfully when she is awake during the day she is mostly happy, although yesterday was a horrible day of crying way more then she was happy. Her poo is still normal so that is what is telling me it's not a reaction.

I got a call from the dietician this afternoon and we are going to get a reflux medication prescribed for her and see if that helps. I already have a doctors appointment on Thursday and will hopefully get her onto Losec. I know it can take up to 2 weeks to see any improvement, i'm just hoping it's sooner. It's so hard to see my little one in pain so much.

Once the reflux is sorted out, we are going to start Iyla on a thickened form of neocate formula called neocate spoon. She 'shouldn't' react to this but it has more corn in it i think as the thickener and there are still a few kids that do react to it. If she tolerates it, this will be her first introduction to a solid 'food'. It will also hopefully help for the reflux.

Once we know she is tolerating the neocate spoon, then we will start with solids. I'm guessing this is all going to take some time so she probably wont even begin solids until the end of January, early February. I'm in no hurry though. It's all too scary! She is starting to get very interested in food though, she watches us so closely when we are eating and is always trying to reach out and grab it. She will just have to be patient.

Monday, 2 December 2013

Poem about FPIES

Yesterday was a horrible day for poor little miss Iyla. I feel bad because i decided to start giving her the multivitamins on Sunday afternoon, obviously not the right decision. She had been doing so well on Saturday and Sunday morning and was finally over her reaction from last week. We did the muscle testing with the multivitamins and my arm was strong, which means she should have been fine with it. That was really the thing that made me give it to her. I want her vitamin D levels to be up before we start solids as we are hoping that will help her tolerate more foods. I gave her the vitamin drops at about lunch time and by that night things were already going down hill. She was really struggling to go to sleep and seemed to be in a lot of pain. She wasn't spewing any more then normal so i wasn't sure if it was the vitamins or not. That night was awful. She woke up so many times screaming and in pain. By Monday morning she seemed to be a bit better so i thought maybe it was just a fluke bad night. She was still a bit miserable and having trouble sleeping though. I gave her more of the vitamins at lunch time again. Because there was no real sign of reaction i wanted to try it again and see what happened. She was awake for an hour or so afterward but then when i put her to bed she only slept 20min. She woke up screaming blue murder and when i took her out of bed she did a massive projectile vomit. It was bright neon yellow as that is the colour of the multivitamin. 

For the rest of the afternoon it was a mix of screaming, crying, whinging, spewing, curling up in pain and not sleeping. I finally got her down for the night at 6.30pm. She woke a few times crying but patting her butt got her back to sleep ok. But then at 8pm she woke up screaming again. The poor little thing was in so much pain. As i was rocking her and trying to get her back to sleep i was inspired to write a poem about what it's like watching her have a reaction like that. It took till 10.30 to finally get her back to sleep properly, but then thankfully she slept good until 4.30 this morning. Hopefully today is better. We redid the muscle testing last night and my arm was VERY weak! Sometimes it does that when she has a build up reaction. I remember it with Abbey too. Definitely no more multivitamins though!!!


The screaming has subsided now, I hold you in my arms.
I whisper softly in your ear, some verses from the Psalms.
You try to sleep, your eyes closed tight,
We all wish you to go night night.
But stomach pains will not recede,
A sleepless night just might succeed.

I watch your tiny body struggle, I kiss your clammy skin.
You wriggle, squirm and fight the pain, you bring your knees up to your chin.
Your breath is raspy, you cough and gag,
A massive vomit wiped up with a rag.
This misery I would take from you
It’s such a cruel thing for you to go through.

I stare at you and my heart just aches, I smooth your fuzzy hair.
Another cramp which brings a groan, it’s all too much to bear.
What can I do, but wait it out?
Just know I love you without doubt.
I’ll hold you close, for another hour
And pray that God will give me the power.

Saturday, 30 November 2013

Rough week

This week has been pretty crazy. On Tuesday Iyla had a really bad reaction and it's killing me that i don't know what it was from. When she has a reaction (and i remember the same with Abbey) I kind of go in psycho mode, trying to figure out what caused it. She started vomiting at about 10am so it must have been between 7-7.30am that she was exposed to the food. The only thing that remotely makes sense is one of the kids touched her dummy or her after they ate cheerios for breakfast. But i didn't see them near her that morning so i'm still a bit baffled. But anything can happen and kids are so quick. Anyway she vomited every 20-30min till late that afternoon. In the end she was just vomiting bile. She barely slept and was completely miserable.

Since Tuesday she has barely been drinking, her sleeping at night has been terrible, she is still having lots of stomach pains and still doing lots of random big vomits and constant spit up. Yesterday i was seriously considering taking her to the hospital because she was starting to get pretty dehydrated. Her nappies were almost constantly dry. In a 24hr period i think she only did 3-4 wee's. I decided to wait until late afternoon yesterday and finally when she woke up from her nap she got hungry. She drank 2 bottles within 4 hours and then finally her nappies were getting full again. This morning she woke up and she had wet through her nappy. I've never been so happy about wet clothes and bed sheets. Today she has been happy and hasn't spewed half as much.

We also got some results back from her blood tests. We found out that she is low on iron and vitamin D. It seems to be quite common in FPIES kids to be low on vitamin D and i've heard lots of success stories about more foods being tolerated once the vitamin D is sorted out. Iyla needs to go on a multi vitamin (which i'm hoping she doesn't react to) and she will have another blood draw in 3 months to see what her levels are then. NOT looking forward to that!! 

Monday, 25 November 2013

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 :).

Monday, 18 November 2013

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!!

Saturday, 16 November 2013

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!!!

Thursday, 7 November 2013

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.

Thursday, 31 October 2013

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.

Monday, 28 October 2013

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.

Saturday, 12 October 2013

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.

Monday, 16 September 2013

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.

Saturday, 7 September 2013

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!

Monday, 12 August 2013

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.

Wednesday, 31 July 2013

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