My Little Pie

My Little Pie

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.

Monday, 7 July 2014

Antibiotics

As many of you are already aware Iyla is on antibiotics for severe bronchitis. After over a week of random high fevers i decided to take Iyla to see a doctor this past Saturday. We were told she needed to take antibiotics to stop the bronchitis from turning into pneumonia. I'm very thankful we caught it in time. We were very scared to give her antibiotics after our experience with Abbey. We are on day 4 with Iyla now and thankfully our prayers have been answered and she isn't reacting to them too badly. She is miserable most of the day, has awful diarrhoea, has some reflux and is basically off all her food but it's bearable. She is still sleeping well at night which is giving me the strength to deal with her during the day. She just needs lots of extra cuddles. There are still another 4 days to go so we are praying hard the symptoms wont build up any worse. Thankfully the antibiotics are doing their job and her fever is gone. Her chest is still very rattly and although she isn't coughing too much when she does it is heartbreaking to listen to. It sounds so painful. Please continue to pray for a full recovery for her. 

Tuesday, 1 July 2014

Over the past few weeks...

Things haven't been going so great for Iyla for the past couple of weeks. I haven't written about it yet as there was all too much excitement around her birthday.

It all started last Monday when i came home from doing my grocery shopping and decided to go to the toilet before i put the food away. I came back to find Iyla happily munching on a banana. She had bitten right through the peel and was sucking out the inside. She had managed to get quite a bit too. It was time for her nap soon after this so i put her to bed. She woke up 1.5hrs later (exactly 2hrs after eating the banana) screaming like she was being murdered. I went into her room and she had vomited ALL through her bed. I cleaned her up and changed her clothes, only to have her projectile vomit everywhere again. Thankfully we were in the laundry and feeling the spew come i held her away from me and she only vomited on the floor. After this she was extremely tired, clammy and in a lot of pain. I sat holding her on the couch for 1.5hrs while she groaned, moaned, cried, pulled her legs up, curled up into a ball and really didn't know what to do with herself. After this she fell into a deep sleep in my arms but i managed to transfer her into her bed. I had to wake her 2hrs later to go pick Connor up from school. She was feeling better when she woke up but refused to eat or drink and was still very pale.

She had been on her second day of a fish trial but from advise from the dietician we decided to stop the trial for a week and give her gut some time to rest and also make sure this bad reaction wouldn't cause her to lose any of her safe foods.

The next day she was MISERABLE!!! I was surprised she hadn't gotten diarrhoea yet but by that afternoon she was actually severely constipated (this can be another reaction symptom and seems to become an issue around bubs first birthday. We had the same problem with Abbey) Her poo, although hard was still coming out with clumps of mucous.

We had a doctors appointment to get a new script for Iyla's formula and i had to see a new doctor as our usual doctor is away on maternity leave. This doctor had never heard of FPIES so it was good to be able to educate someone else on the condition. He also sent Iyla to get blood tests. I don't know if you remember when she was 4 months she got blood tests to check her vitamin D and iron which were both really low. It was meant to be followed up 3 months later but we never got around to it. Poor miss was already miserable and then we had to do that. It was hard to watch but she was very brave. We got the results in the mail yesterday and her vitamin D is now borderline but her iron is still low. Looks like we have to trial some foods that are high in iron. 


By her birthday Iyla was better reaction wise. But then had caught the dreaded flu. She had a low grade fever, horrible cough and runny nose. We had some sleepless nights due to all her coughing.

Once she was over the flu she found a chip on the floor that one of the kids must have dropped during dinner the night before. Although she is ok with potato she does not tolerate oil very well. This is weird to me as oil has no protein. But obviously there is something in it that she can't tolerate. Abbey was always fine with oils. It makes it really hard with cooking her food. We have tried olive oil and canola oil without success and we muscle tested sunflower oil which tests pretty bad too.

Since eating the chip (which was on Saturday) She just hasn't been herself. She is barely drinking bottles, is really grumpy and is barely sleeping during the day (thankfully not too bad over night!) Her poo isn't diarrhoea but still runny, full of mucous and instant butt burning. She is lots happier today and had a more solid poo this morning. Hopefully this is the end of all the problems and we can start another food in a few days. We have decided to skip fish for the time being and trial spinach instead to build up her iron levels.

Thursday, 26 June 2014

One whole year!!!

Tomorrow the not so little anymore miss Iyla turns ONE!!! It has been another crazy year in our lives. One with many downs but also many ups.

This time last year i was still pregnant and looking forward to the day i would get induced so that my pregnancy would be over and i could start to feel a little better. I was very over feeling sick from high blood pressure and also the constant debilitating migraines. I was also very excited to meet my little girl!! We knew that we had a high chance of allergies or FPIES again but we never expected that the NAET treatment that worked for Abbey wouldn't work for Iyla. We really had our hopes up that even if there was issues they could be addressed and we would be able to enjoy a 'normal' baby.

Our first night in hospital was already rough. She screamed until 5am. She was already spitting up lots and very gassy and was constantly gagging and choking. It was scary but the midwives told me it was normal. I hoped they were right and it wasn't a sign of things to come. Things didn't really improve and when she was 5 days old and pooped neon green poo full of mucous i knew. I remember my heart wanting to break into pieces. Not again!! But then i thought that i would take her straight to my chiro to try NAET with her and that hopefully we could get everything sorted out and i would be able to continue breastfeeding and she wouldn't have to deal with the allergies. We tried for a good few months without any success. It was so hard. especially after having all that hope. We were all shattered.

But now as i look back over the past year, yes it has been extremely difficult, yes it has tested and tried us and more ways then we could have thought possible and yes we have often wanted to run away from it all. But there have been so many good times too. Iyla truly is an amazingly beautiful little girl. When she isn't reacting she is the easiest, happiest and most easy going baby you could come across. She brings so much joy to our lives and so much love to our family. I know i couldn't imagine life without her. I hate watching all the pain she goes through but each food trial that is a pass is so exciting!! We are truly blessed!! I look forward to the day she outgrows FPIES but up until then we will do our best to stay strong for her.

I want to also thank everyone for following our story so far and for all the thoughts and prayers. It helps so much not to feel alone and isolated. 


Here is a photo of her enjoying CAKE!! yes CAKE for her photo shoot! It's made from self raising flour, her formula and a little sugar. (Sugar is protein free so an automatic pass)