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

Almost totally cured!

I'm sorry it has been such a long time since i have updated this blog. I have some very amazing news though! When we thought Abbey was starting to react to things again a few months ago she was actually just a very sick little girl with tonsillitis and we think also an ear infection. It wasn't until she had a febrile seizure and we ended up in hospital that we found out she had extremely bad tonsillitis. After a horrible next 4 days the antibiotics finally started working and she was back to her happy self...and also eating everything again!! We were more then excited!!

Since then she has had mild reactions to blueberries and strawberries and some massive projectile vomits from sultanas but no other symptoms. We always knew grapes were one of her worse foods so we are in the process of fixing these foods. It should only be another week or two and she will be fine with them. 

Abbey has also FINALLY started sleeping through the night. It took a couple of nights of tough love and telling her bottles were for babies and she wasn't getting one anymore. But now she is sleeping from 7pm-7am without any wake ups. I am fully enjoying my full nights sleep and am feeling so much more energetic as a result. 

For anyone that is still interested in the whole NAET treatment. There is a book written by the lady who discovered it. It is called Say Goodbye to Illness and it is written by Devi Nampudripad. She claims that all our ailments from headaches to cancer and everything in between can be caused by allergies and treated in the same way Abbey's allergies have been treated and totally cured. It is very interesting and weird at the same time. But how can i not believe it works after seeing first hand how well Abbey has done? 2 months and 6 treatments and she has gone from eating 1 food to eating almost everything!! It truly is AMAZING!! :)

Not quite all over yet

So here i am back again. I was hoping that wouldn't happen but oh well sometimes the 'magic cure' doesn't fully work. Abbey has been reacting to things again in the last week or so. They haven't been bad reactions, thankfully nothing like what she used to get, but they are still reactions and are causing her some pain, discomfort and some very very foul moods! She has thrown up (huge amounts) twice in the last week and although she had one pretty horrible diarrhoea poop she is now badly constipated. I took her back to the chiro this morning and he tested some things again. Amino acids were fine but wheat, soy and dairy were bad again. I hadn't expected dairy but am thankful he checked for it. He did the massage thing again with those 3 foods and then we got talking about her continuing to react to things and he thinks now that it seems her body still can't handle big doses of these foods. He said sometimes NAET will cure the allergy completely but in some more serious cases the body still wont tolerate it in a fully normal diet. We have to avoid these foods now for 24hrs completely so that the treatment will work better but then after that we still need to be careful in how much we feed her. We are thinking of starting a rotation diet so that we only feed her the foods that she keeps reacting to for a few days or a week and then giving that food a break and bringing in another food and then continuing to swap it around. I am also sure that wheat, soy and dairy aren't the only ones causing problems at the moment as we have done the muscle testing to more things and they are also bad. But i will continue to take her to the chiro until we figure them all out completely. He is only able to do a few foods at a time or the body will get too confused and the treatments wont be as effective.

So we still aren't going to be able to have a totally normal food life with Abbey until she outgrows FPIES, but it is better, LOTS LOTS better. So for that we are still very thankful!! :)

Eating everything but also going a little backward

In the past week we have pretty much started feeding Abbey everything. We figured that if her worst foods weren't causing any problems that everything should be fine. She has been sharing our dinners and eating all sorts of foods for breakfasts, snacks and lunches. We are still staying away from additives and preservatives, but we are doing that for Connor too so it isn't that difficult. Abbey is totally enjoying eating!! On Saturday morning though we noticed that she had started with green mucus filled diarrhoea. She was still happy though so we persisted with the foods thinking her stomach might just be adjusting. By Sunday afternoon, the diarrhoea was worse and the crying had started. She was pretty good overnight but this morning again she was a miserable mess. I am so thankful that i already had a chiro appointment all booked in for her. The amino acids were testing bad again. So a quick massage in the same acupressure points and she already seems lots happier! The chiro told me that she will probably need to come back one or two more times but after that she shouldn't have a problem again. 

It is just so exciting having this whole new life! We want to shout it to the world that our daughter is all better! It has been the hardest 18 months we have ever experienced but we have learned so much and i know our whole family have grown into better people from this experience. We have learned so much patience and i especially have learned how to cope with next to no sleep. If i was told that i would be dealing with this before it happened i would have said it would be impossible. I am known for loving my sleep! I remember when Connor was a baby and was already sleeping through the night at 11 weeks i used to think that God knew exactly what i needed and that is why He gave me a baby that slept so well. That theory was thrown out of the window when Abbey came along. During the sleeplessness and the screaming i learned that the only way that i could cope and the only way i could get through this rough time was by praying and relying on God to give me the strength to deal with it. And here we are now. We all managed to get through it. I still can't quite believe that it is over!! Well the nights still aren't perfect and Abbey still wakes 1-2 times but that is way better then it used to be. I have been getting a few 8hr stretches and it is amazing the difference it has made to my energy levels and mood. I feel like a new woman! Hopefully we can start teaching her now to sleep through completely. But I'm happy for now and just hoping this whole NAET thing will continue to work and Abbey will continue to be able to eat any food she wants!

I guess that this is pretty much the end of my blog. My Little Pie With FPIES no longer has FPIES :). There is no way that 6 months ago when i started it i would have known that we would find a cure. I was thinking that we would be in this for at least another 2 or 3 years. I am not complaining though! No parent wants their child to suffer with pain or to miss out on food which is such a huge part of our lifestyle. I pray that every parent with a child who has FPIES, or even other allergies will try NAET with their children. And i really hope they get the same results as we have gotten. 

I also want to take this time to thank everyone for their thoughts, prayers, cards, meals, phone calls and visits, especially over the past year. They made my life just that little bit easier and helped me to smile. I am mostly thankful to God though for bringing us through this journey and answering everybody's prayer.

The weird and the wonderful

I have been asked by a few people to update my blog and i'm sorry it has taken so long. I just haven't really been in a mood for writing and i also don't really know how to explain what i need to write. But i'll give it my best shot.

So as most of you know we are back from hospital and the endoscopy came back clear for inflammation, EoE and Celiacs. After this test was done the doctors and immunologists wanted to start trialing Abbey on foods to see what her reactions were like. They started feeding her all the foods that she reacted to the worst. First they tried carrot, but that one didn't work as she threw up shortly after eating it due to feeling sick from the general anesthetic. The next day she was given weetbix for breakfast to start trialing wheat. Then she was given spinach for lunch and then pasta for dinner. We were shocked and a bit embarrassed when she had no reaction what so ever! The doctors were confused but said maybe she will have a more delayed reaction so they wanted to keep us in the hospital and continue to feed her food and see if anything happened. The next day Abbey was given weetbix again, then chicken for lunch and rice for dinner. Apart from a good sized vomit overnight and a pretty restless sleep things were still fine. Nothing like the hours of screaming in agony that we usually had from foods at home though. The normal mucus filled diarrhoea also never started. We were even more embarrassed and VERY confused!! Abbey's immunologist came to see us on the Friday morning and told us that Abbey's reactions were all behavioural and if things went bad when we got home again we just had to give her time out when she screamed. Of course this made me very angry! An 18 month old screaming inconsolably ages after being given a food and it being "behavioural" does not make sense. They have a short memory and lack the ability to tantrum about something hours after the event. And besides, Abbey LOVES food! She would eat anything we gave her and if she really wanted to be behavioural about food i would think it would start with the refusing to eat it. So i have no doubt in my mind that Abbey's reactions are NOT behavioural and they have been VERY VERY real. There is something else at play that has caused her to not have any reactions. And that is what brings me to the story of my chiropractor.  

A week before we went to take Abbey to hospital i had taken Abbey to see my chiropractor. He has been very interested in helping me find cures for Abbey's allergies and since she was a baby he has taught me things like the muscle testing and has also done things with her to hopefully help. Previously none of it has worked. The last time i saw him he wanted to do some tests to see if anything else was the problem and not just the foods. He does this technique called NAET which stands for Nambudripad's Allergy Elimination Technique. If you click on the link it will take you to a site that explains it. It is very weird and i seriously didn't think it would work, but i was kind of desperate and i had heard of it working for a lady in America who has a son the same age as Abbey who also was allergic to pretty much everything. After 3 sessions he was able to eat everything. The chiro started off by using the muscle testing i have talked about previously to work out if there was any other problems. According to his test she is allergic to amino acids. Amino acids are directly related to protein, so that makes sense that she was reacting to the protein in foods. After he worked this out he did massaging on some acupressure points down her spine, in the fleshy part between her thumbs and fingers and also on the tip of her ears. I know VERY weird and i can understand if people don't believe this. I used to be one of those people, but now i have seen the results for myself and i cannot deny their effectiveness. When we were in hospital and Abbey wasn't reacting it slightly crossed my mind that what the chiro had done must have worked, but i didn't really want to believe it as it still doesn't really makes sense to me. But i have no other explanation. It was only 4 weeks ago that Abbey had a terrible reaction to a teeny bite of a biscuit. She screamed hysterically for 3 hours and had diarrhoea the next few days. After doing this technique she is now eating wheat every single day without any problems. There is no other way for that to be possible. I don't think it is possible for her to have outgrown her reaction in a month. I have heard that the technique needs to be done a few times to hold its effectiveness but after that patients should be allergy free forever. I will be taking Abbey again next week just to be on the safe side. There is no way i want her to go back to the life she had before of not eating anything. Even if i have to take her to the chiro every few weeks it will be totally worth it. It is the most amazing experience seeing her eating and totally loving it! We are so happy and so thankful to God for answering our prayers! He deserves all the thanks and praises! 

Ok so now on to what Abbey is eating. Here is her new safe list:
Rice

Chicken

Dairy

Wheat

Pumpkin

Potato

Apple

We are still trialing foods slowly to make sure there are no problems and so we know if she does react to something we know what it is. Today we have started trialing eggs. I got to make her some apple muffins and got to use all 'normal' ingredients. It was very exciting!!

 

So sick of waiting!!

Well it is Friday now and we have been in Perth since Tuesday, waiting, waiting and waiting some more for an available bed at PMH. It is getting beyond frustrating! Reuben could be at home working and we are paying for accommodation for nothing! But ah well, there isn't much we can do about it. Hopefully we get a bed over the weekend. 

The kids have been really good though and are loving our apartment. I am very glad now i found a house to stay in and we aren't stuck in a motel room. We have been doing some site seeing and shopping, but because we are constantly waiting for a phone call we don't want to risk going too far away from Perth City and losing our bed to someone else if we don't get there on time.

Thanks to everyone for their thoughts prayers and kind words. I'll keep you posted on when Abbey actually gets admitted.