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.

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!

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.