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.

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!!!

LIFE WITH FPIES…

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.

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!! 

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.