My Little Pie

My Little Pie

Tuesday, 16 September 2014

So confused, frustrated, tired and sick of FPIES!!

We have no idea what is going on with Iyla at the moment. She just isn't getting better...well we might have a good day or two here or there...but mostly she is miserable, sleeping crap, eating very little, pooing out copious amounts of mucous, then pooing out hard pebbles and randomly vomiting. Every time we start to get excited that she is getting better things go down hill again and i'm ready to scream to the world that i HATE FPIES!!! 

I'm sure everyone that see us thinks things must be going well because every time we drop Connor off at school or pick him up she is full of smiles and cute hellos for anyone walking past. I'm thankful for the fact that after the screaming in the car the whole way to school i get a few minutes of peace (until we are back in the car or home again) but i feel like she is making me look like i'm making this whole thing up. Trust me, i wish i was! I would stop 'making it up' in a heartbeat so that we could have our happy little girl back. 

We are thinking that her reaction to the soy in the homebrand wheat biscuits has messed up her gut and that it might take awhile for things to go fully back to normal. We are also wondering if it will be worth it to put her on complete gut rest for a week. That means no solid food and only formula. I'll talk to her dietician about it first and see what she thinks. Iyla will hate it and i know it will rough on us too as getting her to drink her bottles lately is a huge battle. But something needs to change before we all go completely insane.

Wednesday, 3 September 2014

Another rough few weeks

We have had some more issues with Iyla over the past few weeks. She seems to be having reaction after reaction. She has reacted to homebrand wheat biscuits (after we found out they have soy in them) so it's back to vita brits. She also reacted to the compounded paracetamol we got for her. So frustrating to still not have something to help her with teething pain and fevers. After talking to the pharmacist they confirmed that no food products were used to make her paracetamol and it seems it's just the paracetamol itself she is allergic to. Vanilla essence is another thing she reacted to. I added 1 teaspoon to a cake i made for her and it was a huge no go. I've since made the same cake again but replaced the vanilla essence for golden syrup. It's a huge hit! She also reacted to yeast after Reuben really wanted to try make her bread. I really need to get onto trying sourdough! And last but not least she reacted to a tiny piece of apple Abbey dropped on the floor. That made for 2 awful sleepless nights and an unending amount of poo! She is lots happier today, although still off most food and drink.

I'm sure you can all understand this has left me pretty exhausted. I'm seriously hoping for a few weeks reaction free so I can catch up with sleep and housework, and also not have to listen to crying almost all day long. I have been coping mostly ok, but the last few days have been extra rough. I seem to get to a point that it all gets too much and i find it hard to do anything but the bare necessities. I know if things keep improving i'll be back to my normal self in a few days. But my kids and husband need to be patient with me. Thankfully Reuben has been amazing and listens to all my complaining and gives me a much needed break when he gets home from work. Connor and Abbey seem to sense when things aren't going so well and they play up big time. I work hard to still pay enough attention to them but they always seem to get extra clingy when Iyla isn't well. I guess her crying gets on their nerves too. 


Hopefully when things have settled down some more we can start another trial. But i'm not going to push it right now. We all need a bit of a break.

Friday, 22 August 2014

Avocado = SAFE!

Even though we are only on day 5 of the avocado trial i've classed it as a pass as Iyla has had no problems what so ever and usually by day 5 we at least see some issues starting to arise if there are going to be any. We are quite surprised about this pass. It is common knowledge in the FPIES world that banana and avocado often go hand in hand reaction wise. I was a little worried about starting the trial because we know Iyla's reaction to banana is pretty bad, but the muscle test said it was fine and i've been a bit desperate for an oil to cook Iyla's food with. Avocado oil is very expensive but as least we have something now. It will make her pancakes a little easier to cook and i can roast things now too. Yay!!

Here is a picture of Iyla's dinner tonight. Looking like a very 'normal' dinner! Slow cooked lamb with gravy made from the juices, chips and some broccoli mixed with potato. She hasn't eaten it yet but i'm sure she'll love it! :)


Saturday, 16 August 2014

More ups and downs

I haven't written for awhile and quite a bit has happened. Our whole family came down with a horrible flu that gave us 40 degree Celsius fevers. Panadol was needed every 4-6 hours to keep it down. Of course we already knew that Iyla was allergic to Panadol and at first we tried the suppository ones which worked but still caused mild reflux issues. We coped with that ok but then it stopped working and didn't bring down her fever at all so we had to give her oral Panadol. This caused reflux, diarrhoea and sleep problems, we didn't have a choice though but to give it to her. I decided that i really needed to get her some compounded Panadol without any flavours, additives or preservatives. I called up a pharmacy in Perth as there isn't one here and got a 6 month supply for a crazy $45 plus $10 postage. But it's best to have some on hand just in case. I'm hoping now that we have something that can help ease her reaction pain now too.

She has had a few reactions lately too. One quite bad one about a week ago that involved a lot of screaming! I'm not really used to that anymore! It was horrible!

On Friday she got into my bag of M&M's and ate at least a handful before i saw her. I was freaking out she would react badly but she surprised us. She was happy all day and just had a little bit of reflux. That night she slept through the night! Yesterday she stank the entire house out with her poo though!! It was putrid and runny and full of mucous! Only one though so that also was surprising.

Even with all this going on she has passed another food!! Watermelon is now a safe food! I've been trialing it for a week and she hasn't had a single problem. 7 safe foods now!! It's so exciting!! 




Thursday, 31 July 2014

Good and bad

It's been such a crazy few weeks. Thankfully Iyla has completely improved after her antibiotics reaction. She has had a few mild reactions since then after family gatherings following the sudden death of Reuben's Aunty and Uncle on the Malaysia 17 flight. Of course we wanted to be with family in this horrible time but with people and food everywhere it's hard to keep Iyla away from it. She doesn't like being held anymore and just wants to explore. But the reactions weren't too bad, just a few vomits, restless nights, some diarrhoea and grumpiness.

Throughout these reactions we still managed to successfully finish a strawberry trial which Iyla has passed with flying colours!! It's very exciting to add another fruit to her diet. Of course she loves them! I am busy making her strawberry sorbet today for something different. I still haven't managed to find time to try out the potato yeast. But i will eventually. Now we have to decide what to try next. We are thinking another meat so i'll do some research into what meat would be more easily tolerated. 


Back to the Malaysia tragedy, i just wanted to say that i continue to pray for every single family member, friend and work colleague who has lost someone. I hope that they can all find comfort in God's love.

Tuesday, 22 July 2014

Getting impatient!!

I am getting so eager to trail a new food with Iyla. It's been weeks since we have been able to! Reactions and sickness have been non stop. Right now we don't really know what is going on with her. The past week she has been really really grumpy (unless we are out), she has had random diarrhoea that isn't mucousy but is very acidy, runny, green (could be the broccoli she eats), and burns her poor bottom instantly. The other day she threw up twice. Once a huge one and the next just a big regurgitation of her dinner. Then randomly she'll be constipated for a day. I'm so confused! Could also be teething i guess. She has two that are close to cutting through. But the constant grumpiness, everything is a huge drama, i want mum to hold me all the time and random hysterical screaming fits seem a bit dramatic for teething. She has never done this with her other teeth and the ones coming through aren't molars.I don't want to start a new trial now when i don't know if there is a reason for her behaviour and poo problems.It will just confuse things even more. I need some patience though!!

We thought after her reaction to antibiotics that she had lost honeydew melon as a safe food. I fed her some and exactly 2hrs later she woke up screaming hysterically. She screamed non stop for 2hrs when i finally gave her a bath to try help with the obvious tummy pains. It helped and she crashed out in bed after that. When Reuben came home from work though we did the muscle test with the melon and it was fine so the next day i bravely gave her a little bit again. She was perfectly FINE!! I was so happy! The next day i found an apple core on the floor behind the kids chairs (Grrrr! Just can't seem to teach Connor and Abbey to put them in the bin after they have finished them!!) so i'm guessing that is what caused the reaction.


Onto some exciting news! I got my hair cut today and got talking to the hairdresser about Iyla and her very limited foods. She told me that you can make yeast out of potato and then use that to make bread. I did some googling and found this website potato yeast. I can't wait to try it out! Another form of food would be awesome!! Almost as good as a new food ;).

Saturday, 12 July 2014

My poor baby :(

Iyla managed...just...to tolerate the antibiotics for 5 days. She was pretty miserable with horrible diarrhoea and a badly burnt bottom and was barely eating, but we were surviving. On the night of the 5th day she cried in her sleep all night long. She didn't actually wake up but she was so unsettled. The next morning i was changing her nappy when i saw that there were smears of blood all through the mucous in her poop. Also along with that there was a piece of corn in her nappy (not sure how she got that). I'm guessing the bit of corn just tipped her stomach over the edge and it wasn't coping with anything anymore. That whole day she pooped blood and was MISERABLE! It was awful. After loads of screaming late in the afternoon and evening we decided not to give her anymore antibiotics. Hopefully the 6 days she got have been enough to fully fight off her infection. The next day was also miserable. Her dietician suggested that she needs some gut rest so we are keeping her on formula mainly with only a few bites of foods during the day for now. She has been totally off her bottles though and it's been a real struggle to get her to drink. Last night at 9pm she amazingly drank 2 full bottles one after the other and then slept through the night so that was hugely incouraging!! Today there was no more blood but still runny mucous filled and HORRID smelling poo. I'm sure i'll never forget the stench of reaction poo! I'm hoping she is fully on the mend soon so that we can continue trialing foods and hopefully find some more for her.