My Little Pie

My Little Pie

Sunday, 18 November 2012

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!! :)

Sunday, 16 September 2012

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!! :)

Sunday, 26 August 2012

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.

Tuesday, 21 August 2012

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!!

 

Thursday, 9 August 2012

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.

Monday, 6 August 2012

Goodbye

Just a quick post to let everyone know we are about to leave for PMH. I'm a bit of a nervous wreak but that is mainly because i have no idea what is going to happen once we get to Perth. We don't know if we will even get in today as it depends if they have a bed available. And i don't really know what tests they are all going to do on Abbey. I really hate the unknown and not really being able to plan anything. But i guess i'll just have to get over it and learn to take things as they come.

I'll try keep everyone updated as much as i can and I hope you all have a really nice week!

Thursday, 2 August 2012

Everything is sorted! Finally!

I FINALLY found somewhere to stay in Perth that is relatively close to PMH and also not to expensive. Its so nice to take a load off. I have been majorly stressing about it! Our appointment is now next Tuesday the 7th of August. Thankfully we were able to change the date and didn't have to rush to Perth Tuesday just passed! I am so nervous about going though and all the tests Abbey is going to have done, but i'm also super excited that maybe we will get some more answers. It is getting more heartbreaking by the day seeing her unable to enjoy food.

Talking about food, I restarted feeding Abbey pumpkin on Sunday. Things have been very up and down since then and i'm a bit unsure how it's all going to go. Some days she has good days and is very happy, but other days she is so miserable and clingy i don't know what to do with her. She doesn't have diarrhoea but her last poo was very acidic green and runny. It was instant bum burning and smelt terrible. That was yesterday though and she hasn't done any today. She has vomited a few times. 1 big one on Monday and a few smaller ones since then. She is also spitting up quite a bit and gagging lots after bottles and eating. We will just have to wait and see what happens i guess.

Thanks to everyone who helped me search for accommodation and for all the very kind and thoughtful offers! It reminds me again of what a blessing the communion of saints is! 


Friday, 27 July 2012

PMH frustration!!

We have now joined all the other people in realising how frustrating our health system can be! Lots of lack of communication! I received a phone call from PMH yesterday basically telling me that they had booked Abbey in on Tuesday. We have been waiting for this so it didn't even cross my mind that this date might not work and i just agreed to it. I spoke to Reuben later on and he told me that there is something wrong with our car and he has it booked in to get fixed next Wednesday and that we really shouldn't drive it for 4 hours, so i had to try change our appointment date. I had no number to call back to change appointments but thankfully someone rang me this morning to confirm our appointment. I asked her if there was a possibility of changing it to the week after and she said she would look into it and ring me back. By 4pm i still hadn't received a phone call so i rang her (i had remembered to get her number this time) only to be told that everyone had gone home at 2pm and i would have to call back on Monday. So now i have to wait all weekend without being able to make any plans and have no way to organise accommodation at Ronald MacDonald House like we were planning. If we still need to go up to Perth coming Tuesday i have no idea what we are going to do! I am just really hoping that we manage to get our appointment changed and don't have to stress too much. I really hate not knowing what is going on!

On a positive note we are very thankful that they are taking us seriously and that Abbey will get all the tests done that need to be done. We have been told that they don't know how long we are going to be up there for. It could be days it could be weeks. It all depends on how her tests go and also how her food trials go. I really hope we get some answers and that they will be able to help in some sort of way to manage to get Abbey tolerating at least a few foods. 

Abbey is still not eating any solids, but we have added an extra scoop of formula powder to her bottles to help her not feel so hungry. With the 4 scoops she was having before she was drinking 13 bottles in a 24hr period. Now with 5 scoops she is back down to 9 bottles. She is still very unhappy about not being able to eat and i am so desperate for her to eat again. I'm always so tempted to give in and let her have a bite. But i know that will only lead to hours of screaming. So a few tantrums is easier to deal with then that.

Her diarrhoea isn't as bad as it was before, in that she isn't pooing as often. But they are still very green, runny and foul smelling! Overall her mood is ok, but night times are getting worse by the day again. Hopefully it's not the formula causing this and its just her stomach getting used to everything again.

Monday, 23 July 2012

Saw the doctor

I finally got in to see Abbey's doctor this morning. We talked about her weird spaced out episodes and the doctor is convinced that they were seizures. She said these type of seizures don't cause any brain damage and aren't really dangerous, but she still wants me to try video one if we see it happen again. Then she can give me some more advise and tell me if they really are seizures or not. From there we will decide if anything needs to be done about them.

We also weighed Abbey and she has lost half a kilo. The dietician is not going to be happy with this. But i'm hoping it means that things with PMH will get rolling quicker. The doctor also wasn't impressed that we still hasn't heard from PMH so she rang them herself and got them to put us on the urgent list. We were meant to be on the urgent list months ago but obviously there was lack of communication or something. Hopefully this time is works and we can get another appointment and get some tests done to make sure nothing else is going on. 

In regards to Abbey's mood and sleep, things have improved heaps! On Friday morning i was at my wits end. She had been off all food for days and there was still no improvement. Things were only getting worse. I was heading off to Perth without the kids first thing Friday morning and i was so scared to leave Abbey with Reuben the way that she was. I decided to try put some onion juice in her ear just to make sure it wasn't another ear infection. (I actually think her reactions cause her ears to become inflamed along with her other cold like symptoms. I don't think they are proper ear infections but an ear ache can be pretty painful!!) 1 min after the juice was in both ears the screaming just stopped. She stopped throwing herself around and actually drank a full bottle for the first time in days and then went off and played happily! We were both stunned and felt guilty for not trying this sooner. I left for Perth a little more relaxed and Reuben did a fantastic job with the kids!! I managed a couple of full nights sleep with the aid of sleeping tablets just to make sure i did sleep the whole night! I feel so refreshed!! Abbey was perfect the whole 2 days and only woke Reuben once a night!! She kept up the trend last night too so lets hope it lasts!

When i saw the doctor today, she confirmed that Abbey's ears were pretty red and painful looking. We will continue with the onion for a few days and hope it clears up.

The only thing that is really causing concern now is diarrhoea. Yep, its back, and getting worse by the day. I'm not sure what to make of this and not really sure what is causing it. I'll get to talk to the dietician tomorrow so i will see what she says about it.

Tuesday, 17 July 2012

Back to NO safe foods

Things still aren't getting any better...its actually been getting worse. Monday night Abbey barely slept and yesterday she only had a tiny nap during the day and screamed almost the whole day. Yesterday I decided to pull all foods again. I am so devastated. Its the worst thing to have to tell a 17 month old that has only just started eating a few foods (and totally loving it) that she can't eat anything anymore. She has no idea that food is what causes all her pain and of course she doesn't understand why I'm not letting her eat. I think dinner times are going to cause some tantrums. Hopefully she only needs a week or two break before we can start adding foods again. She did sleep better last night, only waking for bottles and didn't do any screaming. But today she still isn't a very happy girl. I really hope cutting foods will improve things for us all and that it's not her formula causing the problems. The would be terrible!! She definitely reacts to her formula in more concentrated amounts but having it diluted has been working so far. If she is starting to react to even the diluted amount i don't know what we will do. 

We are also still waiting to see a doctor about her possible seizures. She hasn't had anymore so hopefully that means it was either from her feeling so sick she just didn't want to interact with anyone, or because she was dehydrated. 

Saturday, 14 July 2012

Still not getting better

So, even though we have cut out spinach and canola oil, we haven't been seeing any real big changes in Abbey's mood, sleep or appetite. On Wednesday she had another 3 spaced out episodes that kind of freaked me out. We decided on Friday to retest all of her foods with the muscle allergy test and now everything is testing bad. We are thinking that one of her foods has been a very delayed reaction and that it has inflamed her stomach too much and now we are back to square one. Now the problem is working out which food is the truly bad one.

After speaking with Abbey's dietician we have decided to cut back down to 4 scoops of formula per bottle instead of 5. Cut back on the amount of probiotics we are giving her and only give it every couple of days instead of everyday. The dietician thinks its the probiotics that are the problem. They have potato in them and because it such a small amount it could have taken this long for her to start to react to it. We have also cut back on apple. Apple is pretty acidic so that could also be causing problems. We aren't cutting out all her foods though, so we can only hope that things start to improve with the changes we have made and that the problem isn't from one of the foods we are still feeding her. 

Since making these changes Abbey's appetite has gone back to normal. It's a bit hard to judge her sleep patterns because we went away this weekend and being away from home really messed her up. We will hopefully see improvement now that we are back at home. She is still spitting up heaps though and doing lots of burps, having hiccups heaps and she is also really gassy.

Her dietician also wants me to take her to see her normal doctor here to make sure her spaced out moments weren't seizures. Being lethargic and out of it can be a symptom of FPIES but we have never seen it with Abbey before and it usually comes on from lots of vomiting which causes dehydration. Hopefully there is nothing wrong and it was just from her being dehydrated from barely drinking for a few days.

Wednesday, 11 July 2012

Spinach is a fail

After Abbey got better from her horrible cold and ear infection we started a spinach trial. Like i said in the previous post i didn't think it would work. Although it sounds like a definite fail, with random stomach cramps, screaming, hardly sleeping and hardly eating, she didn't get any diarrhoea. I didn't want to call it a fail right away and after talking to Abbey's dietician we decided to stop until she was back to normal and then start again. In the time we stopped, her sleeping, eating and mood improved.

We started the spinach again on Monday and the last 3 days i have only managed to get 1 full bottle into Abbey throughout the day. She is still drinking 3-4 bottles during the night but that is no way near the 9 she usually has in a 24hr period. On Monday night she had 1 screaming fit during the night and woke me 5 other times just for cuddles or a bottle. Yesterday she had lots of screaming fits throughout the morning. It took a long time to get her to go for a nap and then she only slept 30min. She woke up screaming hysterically like she was being murdered. Once out of bed though she was completely spaced out. We couldn't get anything out of her. She refused eye contact, refused to talk, wouldn't eat. She just laid against us staring into space. It was so weird! I could even lift her arm and she would just let it flop down like she was fast asleep. This lasted for about an hour and after that she was back to her happy usual self. I spoke again to her dietician and we again decided to give it a break for a few days and then try again. Seeing as she still has no diarrhoea we aren't quite sure what is going on. 

After last night and today though i have decided to call it quits. Abbey slept fine until about 11pm. She just woke twice for a bottle but then went right back to sleep. From then onward though it was awful. She woke me 7 times between 11 and 5.30am. So basically hourly. Today she has also still been having heaps of stomach cramps and had another weird spaced out episode. I'm still not sure what that means but its a bit scary. We decided to do our awesome at home allergy test with all her foods again just to make sure nothing else could be the problem. It turns out canola oil and spinach are the ones giving her problems. So we will be stopping the oil too. I really really hope she is back to her happy self soon and starts eating again!! 

Wednesday, 4 July 2012

Being sick makes things so confusing!

Last week Thursday Abbey had the start of a cold. It wasn't bad, just a runny nose and a bit of night time coughing. The next day she was totally miserable and started getting diarrhoea that was pretty mucousy. At first i thought it was from the canola oil we were trialing. Runny nose and a cough are a very common allergy symptom for her with food and adding the mucousy poop to that didn't look promising. I was so disappointed but decided to pull the canola oil and see if things improved. Although her mood didn't improve or her cold, the diarrhoea settled. I really thought it was the canola oil and was expecting things to keep getting better. They only got worse though as the next day she developed a high fever. Because she reacts to normal panadol and nurofen i have the panadol suppositories for her. I tried to give her one but her diarrhoea had returned and within minutes she had pooped it out again. I tried another straight away with the same results. Her fever was just getting higher and higher. Those were the last two suppositories i had left so i rang Reuben to ask him to pick some up on his way home. I am very thankful that he came home early at 4.30pm because by that time her fever was so high the thermometer wouldn't read it anymore. It was just beeping at me like crazy and flashing high on the screen. I think it must have been over 40 degrees. I was going to take her to hospital straight away but Reuben convinced me to take her for a lukewarm shower first and then when she was out see if the panadol had worked at all. (thankfully she managed to wait half an hour before pooping again.) She almost fell asleep on me in the shower and we wasted a lot of water! But oh well, anything to make my little girl feel better. After i had dressed her again i rechecked her temp and thankfully it was down to 39 degrees. Still high, but after another 10 minutes it was back down to 37 degrees. What a relief!! 

The next day her fever stayed at around 38 degrees all day and the next day she had no fever at all. But she was still very miserable. On Sunday night she basically screamed blue murder all night. She refused bottles and i just couldn't calm her down. By 6am after i had finally gotten to her sleep after another one of her screaming fits, it hit me that she was always pulling on or putting her hands over her ears and that she screamed worse if i laid her a certain way on me in the rocking chair. I started to wonder if she might have an ear infection. When she woke up later on that morning she started out happy, but within half an hour was a hysterical screaming mess again. Knowing she reacts to all antibiotics i didn't even want to bother with a doctor. I used some amazing onion juice and put a few drops in both ears. Within 5 minutes the screaming stopped and she was touching her ear like it was brand new. :) She was back to herself after that and although we had a lot of wake ups the next night from coughing, it seemed she was finally better.

It seems weird that i am thankful she was just sick and not reacting to the canola oil. But food is so important to us and every fail is devastating! Colds and flus come and go within days but if a food is a fail she will lose it for a long time! Since her cold went away we have returned to the canola oil without any problems and have classed it as a pass!!! Yippee!!! We have now started spinach as of yesterday but this one isn't looking too promising! I hope in a few days i have some good news, but i'm really not expecting it after the screaming and tummy pains we dealt with last night and this morning. 

 Abbey with Reuben just before our shower when 
her fever was over 40 degrees

 I kicked Reuben out of bed to deal with Abbey
at 4.30am after basically not sleeping for a 
whole night. This is how i found them 
at 8am when i got out of bed.

Monday, 25 June 2012

First proper dinner!! So exciting!!

I just had to come on and write a post about Abbey having her first proper dinner with us tonight! We are on day 6 of our beef trial with everything going well, so today i made her some meatballs. She got to eat all of her safe foods for dinner tonight, so had a plate of meatballs, some pumpkin and some apple sauce. She was so very excited and couldn't keep the grin off her face. She felt very included and big! Because i needed to fry the meatballs in oil we have kind of started a canola oil trial at the same time. She was totally fine with canola oil before her birthday so i'm not expecting any problems. But i have been wrong before. Hopefully this is not one of those times. 

Here are some photos of her enjoying her dinner. :)




Saturday, 16 June 2012

We need some sleep!!

I really need to remind myself how i coped with 2hrs or less of sleep a night for the first 7 months of Abbey's life. We have had 4 horrible nights here after starting Abbey on fish and i have had enough. I've even managed 3-4hrs of sleep. But i guess when your body is used to a bit more sleep again, as soon as you get deprived it takes awhile to adjust. I have decided to call fish a fail anyway so hopefully the night sleeps will improve.

Her reaction to it wasn't too bad, just difficulty sleeping, comfort feeding (drinking 11+ bottles a day), one large vomit and one horrible poo this morning. Thankfully during the day she was still mainly happy. I was going to keep going with the trial but we are struggling to get her to eat it now and its just not worth trying to force it on her when i know more than likely her reaction to it will only get worse and not better. I even tried to hide it in her other food but she found it pretty quick and spat it out and refused another bite. A bit of a change from the first day when she chewed on the small piece i gave her for ages, smiling away and saying yum, yum, yum.

I haven't talked to my dietician about any of this yet so she might have other ideas, but I'm pretty sure she will let me do what i think is best. I'm not sure what food we are going to try next but hopefully we will find something Abbey can tolerate soon. I knew i was getting a bit ahead of myself in my last post saying i was hoping Abbey was outgrowing her allergies...I have to remember, just one tiny baby step at a time.

Monday, 11 June 2012

Life is good!

It is so nice to finally be able to write some happy positive posts. I was starting to think that life would never get any easier. It's funny how when things are bad you can't look past the bad and kind of feel that it will always be that way. Now that things are going good i keep thinking that it can't possibly get bad again and maybe...just maybe Abbey is finally growing out of her FPIES. I'm trying not to let myself go there because i'm sure we aren't anywhere near her growing out of it. We only have 1 (can just about say 2) safe foods and i don't want to put myself up for disappointment if she has another bad reaction. But i'm hoping and praying that things will just continue to get better from here. 

We have seen HUGE improvement since giving her probiotics though. Over the past week she has eaten food off the floor - part of an Anzac biscuit (containing oats and wheat) and cherrios (containing rice, corn, oats and wheat) and has only had the slightest reaction to them. A bit of disturbed sleep, a few spit ups and some long lasting wet hiccups. But overall they could hardly be classed as reactions. Before giving her probiotics she would react to the slightest amount of anything and sometimes wouldn't even need to swallow something to react to it. It's going to make my life so much easier if this continues because i wont need to stress out so much if she does find something on the floor. Usually i go into panic mode. Watch her every move, jump at the sound of every cough, hiccup, or burp waiting for her to vomit. I seriously get way to worked up about it but waiting for the moment your child is going to start screaming inconsolably and not be able to do anything to help her through the pain is the worst waiting game ever. 

I am so thankful for the break we are getting now though. I was in desperate need of one! And 2 weeks of no bad reactions has been amazing! I'm starting to feel like i have a normal family again. I have been able to enjoy time with Reuben and i feel i have way more patience to deal with the kids during the day. I can definitely tell that Connor is noticing less tension and stress in the house too. He has been so happy and talkative and not playing up half as often. I am really enjoying my new found happy little girl too. She is so full of smiles and is really starting to grow up. I think because she isn't feeling sick now she is able to learn so many new things and every day she is learning heaps of new words. I think when she starts talking a bit more this house is going to be a full on chatter box! Between Connor, Abbey and myself there will never be a quiet minute. :)

Now the only thing that needs improving is Abbey's sleep! But i know that until she starts tolerating more formula powder in her bottles i wont be getting any full night sleeps. At least she is only waking up for a bottle and then going right back to sleep but having up to 4 disturbances a night really doesn't make for a very good nights sleep. And after almost 16 months of Abbey only sleeping through a few times, the lack of sleep really does start to add up. I'm really looking forward to a solid week of no wake ups! Hopefully one day soon. But i shouldn't really complain, i feel very blessed and thankful for the huge improvements we have had!! We just need to take it one tiny baby step at a time!

Here is Abbey covered in pumpkin this morning! We are on day 5 of our trial and everything is going well so it looks like another pass!! Yippee!! :)

Tuesday, 5 June 2012

Our first PASS!! YAY!!

Apple is classified as a pass!! Abbey is now eating a full serving of apple daily and still has had no reaction to it. I am so excited and have been fully enjoying feeding her!! We were a little worried that she would find textures hard to cope with but the last few days i have been feeding her cut up apple and although she does gag a little bit every now and then she does great with chewing and biting.

Tomorrow we are starting a pumpkin trial. Lets hope we get another pass!

 Abbey fully enjoying eating her piece of apple this morning

Connor thinks it's great that he can share food with his sister

Thursday, 31 May 2012

Apple is WORKING!!!

I am beyond excited right now!! Although we haven't finished Abbey's apple trial yet, 6 days in and we haven't had a single problem with it. We are doing the trial very very slowly and today was the first day she got a full teaspoon. Because its going so good I have decided to start increasing it faster now and will do 2 teaspoons tomorrow, 4 on Saturday and so on until she is having a full serving of it. Lets just hope it continues to work for her. Its so nice to feed her something. She gets so excited when i come with her spoon. She spends the next half an hour licking it hoping to get more.

I have also finished the dress i was making her. I have added a photo below. Since the weather is so bad today i let the kids have a TV morning so i had a chance to finish it off. It looks so cute on her!


Sunday, 27 May 2012

Its time for apple!!

Life has been pretty good with a mostly happy little girl again. We had a couple of bad days after Connor fed her some potato chips but yesterday she was back to her happy self. It was amazing to have a full day of barely any crying. She played happily outside most of the day and just came to me to read her a few books or for bottles. Connor was pretty sick yesterday though, but having a fever made him very tired and he spent most of the day sitting in front of the TV. So overall it was a very peaceful day.

We also started feeding Abbey apple yesterday. We are giving it to her very very slowly and are just doing the tip of a teaspoon for 3 days and then slowly increasing it from there. Today she hasn't been a very happy girl though and we are really hoping it is either a tooth coming through or her getting Connor's cold that is causing this and not the apple. I don't think i can bear another fail. She was so excited to eat even such a small amount, it would be heartbreaking to have to deprive her again. She seems to think though, that since i let her eat one thing today that she should be allowed to eat anything and we had a few tantrums when we were eating because she so badly wanted it. Its the hardest thing not being able to give her something she so clearly enjoys.

I started my very first sewing project with my new sewing machine this past week too. I found a cool pattern on Etsy for a dress for Abbey. So far it is going well. Hopefully i can finish it this week and post a photo. I really hope i don't ruin it i've never done anything like it before. It's so cute though and will look gorgeous on her.

Tuesday, 22 May 2012

Finally some improvement!!

I was starting to think this day would never come again! But Abbey seems to be back to her happy self...hurray!! 3 weeks of screaming, spewing a couple of times a day and diarrhea were a bit too much for me to handle. But since Friday we started seeing small improvements every day. The reason for this i am guessing is because i started adding probiotics to her milk. I used to give it to her every day but somewhere along the way i stopped and had totally forgotten about doing it since. It wasn't until someone reminded me how good probiotics were for the stomach lining that i thought i would give it a try again. I have special probiotics i got from my naturopath. The normal one you get from a chemist have food products in it and Abbey reacted to that. Thankfully this one i am using now has been a great success. I'm not sure of all the ingredients but i do know that obviously it hasn't got any of Abbey's 'bad' foods in it.

I'll have to remember to give it to her everyday and hopefully we will see her get over her fails a bit quicker. Obvious the wheat was just too much on her stomach and caused really bad inflammation of her stomach lining. That is probably why she stopped tolerating her formula too and everything just built up.

After talking to Abbey's dietician yesterday we have decided to give her a break till Friday and see how she is going. We will hopefully have the results back from her stool sample too and we will see if there is anything else going on that we might not know about. We are also still waiting for a gastroenterologist appointment and hope we get in soon. Our case has been classed as urgent, but i guess there are still other kids/people that are worse off then us. Right now that is a bit hard to imagine, what can be worse then a 15 month old baby not tolerating any food at all? But i'm sure others do have worse and have probably been waiting even longer. I'll try be patient. I am just so desperate for answers and so desperate for Abbey to eat something.

I want to also take this time to thank everyone for all the thoughts, kind words and prayers. It is so nice to belong to such an amazing community and church that is always willing to help out. It means so much to me.

Monday, 14 May 2012

Things are only getting worse

I am starting to get very very frustrated with this whole FPIES thing. The fact that i can't do anything about it, the fact that Abbey can't eat any food at all and the fact that now she seems to be reacting to her formula again just sucks big time. I wish with all of my heart that i could take her pain away. I would be happy to have it for her. If only she could just catch a bit of a break.

It has been a very confusing last few weeks with Abbey seemingly not getting over her wheat fail. Although the mucus in her poo has stopped she is still doing very explosive runny poos every day and most of them cover her clothes as well. She has also been super grumpy and having random 10-40minute long hysterical screaming fits where i can't do anything for her. In between these screaming fits she does have happy times and also times where she will just whine and hang off me. I'm sure to lots of people this may just sound like typical toddler behaviour and tantrums but if you know Abbey, you will know that this is VERY unlike her. Also we know that once the offending food is taken out of her diet she goes back to her happy self.

Abbey has also had a bad cold and we all had a bit of a mild tummy bug. We kept putting Abbey's behaviours, poo and the few vomits she did down to these things and hoping she would get better soon. But nothing has been changing. Then on Friday after she had a pretty happy day i decided to add another scoop of powder to Abbey's formula. It hadn't even crossed my mind that increasing her formula amount would start to cause problems again. She seemed to be tolerating it fine. It was still very diluted but we were up to 6 scoops to 240ml of water. According to the tin she should be having about 11 scoops to that amount of water. On Friday i went up to 7 scoops.

On Saturday Abbey screamed/cried almost the whole day. She wouldn't let me put her down but wasn't very happy even with me holding her. This is when the thought that it could be the formula, first crossed my mind. It kind of all made sense. Straight away i went back down to 4 scoops so that i could be sure this was the problem. Abbey had totally lost her appetite though and over the course of Saturday and Sunday she only had 5 bottles.

On Sunday afternoon she finally started becoming happier and this morning her appetite is back. The only problem is that she is still having some random screaming fits where she is in obvious pain.

I can't wait for tomorrow to hurry up so that i can talk to Abbey's dietician and decided what we can do to help her or if there is anything we can do.

I have added a video of one of Abbey's screaming fits today. If you can't handle seeing a very distressed baby don't watch it! I wanted to add it so that i can look back on this and know that it wasn't all in my head and that something really was wrong. So often i feel like its all in my imagination. When we are dealing with the screaming it is awful and i can't imagine anything worse, but once things get better and she is happy again i always think, was it really that bad? or was i just imagining it all? I guess that is the good thing about being able to block bad memories. If we couldn't ever forget or fade out the memory of the bad things our lives would be awful!!




Friday, 4 May 2012

More disappointment

Abbey's wheat trial didn't go well and we are back to square one all over again. On Wednesday we fed her 1 teaspoon of vitabrits (99% wheat 1% salt) at 8am. By 9am she started getting grumpy and doing lots of wet burps. Between 9.30 and 10.30 she started having off and on screaming fits, or she would lay on the floor moaning in obvious pain. Between 10.30 and 11.30 she screamed hysterically and basically non stop. There was nothing i could do to calm her. She kept curling herself up in a ball or throwing herself backward. She didn't want me to hold her or to put her down. I was very thankful that by 11.30am she exhausted herself and fell asleep. When she woke up she had stopped all the screaming but was still totally miserable and still did lots of crying. On Thursday we decided that after such a horrible reaction we wouldn't give her anymore wheat and by that afternoon she was back to being her happy self again. She still isn't totally better yet and now 3 days later she is still doing explosive runny poos and is still spitting up lots. She has also lost her appetite. Yesterday throughout the day i couldn't even manage to get 2 bottles into her. She caught up a little bit before she went to sleep by drinking 2 bottles in a row and then 2 over night but that is still not even 6 bottles in a 24 hour period. She usually has 9. Hopefully she is feeling better soon.

We are going to try apple next and start extremely slow. When she is over her wheat reaction completely we will start by giving her only the tip of a teaspoon for 3 days, then quarter of a teaspoon for 3 days, then half a teaspoon for 3 days ect. We are hoping that by starting so slow we can get her stomach used to it and have a least one food that she can eat.

Abbey's dietitian is also going to try get us another appointment with the immunologist at PMH as soon as possible. She wants to do a trail with Abbey there so they can see what happens and run tests on her while she is reacting and see what is happening to her body. She is also trying to get us in to see a gastroenterologist (GI). They will probably do some studies on her digestive system and see if there is anything wrong there. Hopefully this will get us some answers to what is going on with her. 

Other then all the negatives of the last few days, we had a really fun day yesterday with the kids. Reuben was doing some work at a farm and i brought the kids there so they could see him using an excavator and go for a ride on a pony. They fully enjoyed themselves and Connor was right at home. He is such an animal lover and really enjoys big open spaces where he can roam free and get filthy dirty. I think we need to get a bigger block and some animals! 






Tuesday, 1 May 2012

Happy kids = Very happy Mum!!!

Today was a very rare day in our household. Both the kids were happy almost all of the day. It was so great to see them playing nicely together and to be able to put Abbey down without her becoming a screaming mess. I even got to spend some time crocheting - A hobby that i haven't had time to get into for many months. It was amazing as when i usually manage to get out my crocheting i have one or both of the kids crying at me to read them stories, or they do anything that will make me have to get up. But today both Abbey and Connor loved it and i became especially good at multitasking! At one time i was bouncing Abbey on my legs, had become a race track for Connor's dinky cars and was busy crocheting away a gorgeous beanie.

We were all happy! Its amazing how one day of normalcy can make me feel on top of the world! I feel ready again to charge head on into the coming challenges with a positive attitude.

- I have to admit that having a clean house does wonders to my mood as well!

Talking about a clean house, i had to clean out one of my cupboards today to hide the bin in. It is Abbey's newest find and she is most excited to find that there is FOOD in it. Something we really don't want her getting into when we aren't looking!

I also spoke to the dietitian today and tomorrow is the day we are meant to start our wheat trial. I am a bit apprehensive to start already because after writing to some great ladies on a facebook FPIES group i am a part of i have heard that it is best to wait a week or two after a fail to let the inflammation on the the stomach go down. If her stomach hasn't healed properly yet we will have a higher chance of another fail. We really don't want that. But after voicing my concerns to the dietitian, she seemed to think that there was no reason to wait any longer and that because Abbey has no safe foods, she really just wants her trying foods again as soon as she is back to baseline - having no reaction symptoms. I feel a bit torn as to what to do. We haven't been with this dietitian long and i really want to trust her professional opinion. But i also don't want to be doing the wrong thing for Abbey. For now we will stick with the dietitian and if we continue to see that the way she wants to run the trials aren't working with Abbey we will look into it again.

Please pray that this trial works and we can have wheat added to Abbey's diet!  

Friday, 27 April 2012

I was wrong

I am so devastated right now. Abbey's cauliflower trial is a BIG FAT FAIL!! I was so sure at the start that she would be fine with it and when she started with the crying on the second day i didn't want to believe it. But after 5 days of horrible reflux, trouble sleeping, lots of crying and vomiting the last 2 days there is no doubt about it. We even kept the amount of cauliflower we fed her to only 2 teaspoons. After the crying already started on Monday we were hoping that by not increasing the amount every day we could get her used to it slowly. But obviously that didn't work either. It still amazes me that such a tiny amount of food every day can cause her so many problems. It is all so unfair for her, the excitement on her face that first day (and every other day) was priceless and i'm so sad i have to deprive her of food...yet again. Sadly we are back to square one. 

Now we need to wait until she is fully back to her happy self again and then we are going to start our next trial. Wheat. We are a bit unsure about this one but are just going to bite the bullet and try it, as it will add so many different foods and textures into her diet. It will also be a great filler for her and hopefully she will stop waking so often at night for something to eat.

Sunday, 22 April 2012

Food that is 'allowed'

Finally, after a very long two months we have started Abbey on her first food trial. It was a very exciting moment to put the food in front of her and see what she thought about it. She was a bit unsure at first and kept looking at me like i was about to tell her she wasn't allowed to eat it. After i put the first bit in her mouth though she was onto it, and loved every second. I was a very proud and happy mum!

We are starting with cauliflower as that was one of the safe foods she had before her birthday. We are expecting her to do fine on the first few foods we try as we know that they were safe before. Her two months break should have given her tummy time to heal. But we are still doing a proper cautious trial just in case. Yesterday being the first day, i started by giving her just 1 teaspoons. Today, she will get 2 teaspoons and tomorrow 4. We will continue to double the amount everyday for 5 days and see where we are at. While doing this trial i also have to keep a very detailed journal of everything that Abbey does, what she eats, when and how long she sleeps, the colour, consistency and times she poops and also her moods. This will help me get a better understanding of what is going on and if we might be seeing a delayed reaction. (sometimes she can be fine with a food for a few days before she starts to react to it. The reaction gets worse the more she gets fed).

It is exciting and nerve racking to start this journey of food trails. I am so badly hoping for lots of passes and just want Abbey to be able to eat like a normal child. But i am also so scared of feeding her foods that make her sick. It is the worst thing to see my adorable little girl doubled over in agony and know that there is not much i can do for a the next few hours that will make her feel any better. I'm praying we don't have too many of those times ahead and that Abbey's stomach is able to tolerate more foods soon.





Monday, 16 April 2012

3 years ago...

...I started this crazy, daunting, rewarding and beautiful journey of motherhood. It has been a real roller coaster of a journey to say the least! Before having Abbey, we thought that it wasn't possible to get a more difficult child then Connor. He cried almost all day every day for the first 10 months of his life. After that started the tantrums, the need of constant attention and the endless energy he seemed to have. Being our first we just didn't really know what we were doing and were just fumbling along. 

By the time Abbey was on her way, we were hoping that having a sibling would calm him down and teach him that he wasn't the only kid in the world. We didn't expect the problems we were about to face with Abbey and because she needed so much of our attention and drained, especially me, of all my energy Connor was missing out on attention and the tantrums increased by 10 fold. 

Thankfully learning about Abbey's allergies has been a blessing in disguise for Connor. Looking back on that first year of his life we know for sure now that he suffered from Milk Soy Protein Intolerance (MSPI). It perfectly explained the spewing, the diarrhoea, and the screaming. A few months ago he was still suffering from diarrhoea and i had been putting it down to a fast metabolism. But pooing 5-8 times a day was just getting crazy and toilet training was going to be impossible! Over the past few months i have also been looking into his diet and trying to figure out if maybe he still had a few allergies. 

So far i have worked out that he is allergic to banana, chocolate (cocoa) and coconut. If he has only a small amount of these foods the diarrhoea will return and he will develop a rash around his mouth. Since cutting these foods we have also noticed a HUGE improvement in his behaviour! He is heaps calmer and his tantrums aren't half as bad anymore. It is so enjoyable watching him now and seeing his happy, fun loving, adorable character shine through. Although it has been a difficult 3 years he has been so worth it and i can't imagine my life without him! I praise God for blessing me with my 2 amazing kids. They have taught me so much!

So a BIG happy birthday to my handsome little man! 


Improving!

I finally feel a little bit more in control again and not so much on the verge of tears anymore. After one terrible week things are improving (up until last night, but that is a whole different story and not formula related as far as we know). I spoke to Abbey's dietitian on Friday and she suggested i lower the amount of formula powder i was adding to water. To start with i was following the guide lines on the tin which said to mix 8 scoops of formula with 170ml of water. Now i am adding only 3 scoops of formula to 190ml of water. That is a huge decrease in formula and we are really noticing it on how hungry Abbey is now. She is barely managing 3 hours between bottles during the day and is back to having 3-4 bottles overnight. BUT there are positives and that is that she is back to her happy self!! Her vomiting, spitting up and diarrhoea are all gone too. 

Because of the watering down of the formula she is also drinking it heaps better because it doesn't taste so bad and everyday since Friday i have added slightly more Neocate formula to the goats milk and we are now up to 190ml Neocate to 50ml of goats milk formula.Hopefully within the next few days i can cut out the goats milk altogether and things will keep going good!

Ok...so now we get to the whole other story i mentioned at the start. Last night, when i got home from church i noticed that Abbey was very grumpy and was spitting up heaps. I tried not to stress but after a terrible night of screaming, and waking up every hour or 2 i couldn't help but think that the formula was still not working. I was talking to Reuben about it this morning and saying that i thought we might have to cut back on the formula and mix it with some more goats milk formula again. It was then that he decided to tell me that he had fished a cracker out of her mouth while i was at church....that explained everything. After a pretty grumpy day today, and one mucus filled green poop she seems to be back to normal again. So that proves to me it was more the likely the cracker and not the formula. Phew!!

Tuesday, 10 April 2012

Crying, Crying and more Crying

It has been almost a week since we started Abbey on the Neocate formula and things have been pretty rough. We are still mixing it with her goats milk formula, 60ml of Neocate to 150ml of goats milk formula because she hates the taste. But she has been one seriously miserable little girl. We have had almost non-stop crying, a few vomits and at the start horrible diarrhoea, then constipation and now diarrhoea again. The only good thing is that she has been sleeping a bit better during the night. Although she is taking till 9 or 10pm before she actually goes to bed she is only waking me once or twice for a bottle during the night. I am very thankful for that. It gives me a bit more energy and patience to deal with all the crying during the day.

I am still not sure if we need to stop giving it to her or not but i need to wait till Friday before i have that answer as Abbey's dietitian is away until then. We will keep pushing through for now and hope that her stomach will start tolerating it. From talking to other FPIES mums i have found out it can sometimes take up to a month for kids to get used to it. I really don't know if i can handle it till then but i guess if it ends up being for the better then it would be worth it!

Wednesday, 4 April 2012

Growing Up

Today my little pie decided to learn to walk and go up to size 2 clothes in one day! It's amazing how quick time goes and how fast everything just happens all of a sudden. She has had some trouble walking because she bends her big toes toward each other and then trips over them. Today i decided to buy some shoes that fit her and see if it made any difference. It really did! A few minutes after the shoes were on she was up and walking! She is still pretty unstable and more comfortable crawling but she tries all the time and i know within a week or two she wont even consider crawling anywhere anymore!

We have also gotten our script for the Neocate formula we are going to trial with her. I can pick up the tins tomorrow and we will start adding tiny amount to her normal goats milk formula bottles over the next week to see how she goes and to get her used to the taste. If she reacts to this formula her immunologist has told me that they will hospitalise her and do tests to see if there are any other problems with her digestive system that are causing her to not tolerate anything. I'm really hoping we don't have to do this so i have my fingers crossed this trial goes well!

                             Here is a video of her taking some of her first steps!

Saturday, 31 March 2012

No more soy

After another talk with my dietitian about all Abbey's tantrums and screaming completely ending after 18hrs off the soy formula; we have decided to call it a fail and move on. She talked to my immunologist and they have also decided not to even try the Pepti Jr formula with Abbey and go straight to a formula called Neocate or Elecare which is the least allergenic type of formula. So I'll be getting a script for it and will hopefully get it by the end of next week or early the week after.

It has been so nice to have Abbey happy again! We have had a great day! She has even decided today that she is finally interested in learning to walk and took her first 2 steps! She has been trying all afternoon. It is just a matter of her daring to do it, as we know she has the balance. She can stand alone waving her arms around like crazy and not fall over so she should be able to balance herself while walking I would think. 

She also learned to say her own name this week and its so cute hearing her. She says is very drawn out like 'Aaabbaayy'. She amazes me with how many words she can already say. I was trying to count them all and got up to 20. But there is probably more that i have forgotten. I think she is going to be a chatter box just like her brother! I guess that it's quite understandable though, seeing as Reuben and me are also big talkers. :)

Thursday, 29 March 2012

Soy formula trial UPDATE

Ok, so since starting Abbey on the soy formula she has made everything very confusing. After her first 2 bottles she did one vomit, had one horrible diarrhoea nappy and had a few screaming fits but other than that was pretty happy. We gave her a break over night and we were pretty scared to start again the next morning thinking things would get worse. But oddly enough she was pretty much fine, except for the occasional random tantrum and a few small spit ups. Over night she slept really good except she woke up for 4 bottles! This is a warning sign for me, as it suggests comfort feeding. When Abbey has a slightly sore stomach she seems to think she is hungry and will eat just to make her tummy not hurt for a little while. Of course not realising she is only making it worse. Normally now she only wakes for 1 or 2 bottles during the night.

The next day the tantrums got worse. Abbey is normally a very happy content baby and when she isn't having a reaction i rarely hear her. She will play quietly by herself  or with Connor and not even be overly fussed if Connor steals a toy off her.

Then we get to last night and i can be pretty certain now that things aren't going well. She had two massive non-stop screaming sessions. The first lasted for 1.5hrs and the second 45min. These times don't sound overly long, but trust me, in the middle of the night it seems to take forever! I also know the screaming was worse then most of the screaming she does at night because Abbey even managed to wake Reuben up! In all these months that has only happened a few times! I finally managed to get her to sleep the first time by massaging her tummy with a heat pack and the second time that didn't work so i was left to walk around and around the house while holding her. She is getting WAY too heavy to do that with now though and my back is paying the price!

Today she has been a very very miserable girl and has wanted me to hold her constantly. I got a call from the dietitian and we have decided to give her a break over the weekend and give it another go next week. If it still doesn't work we will have to try the Pepti-Jr formula.

Monday, 26 March 2012

We have a plan!!!!

Well after 3.5 long weeks of waiting i finally heard from my dietitian and we have come up with a plan for Abbey. A big problem Abbey has had since she started drinking goats milk formula is that she has been seriously constipated. So bad that if she wasn't reacting to anything and having diarrhoea, she would have 3-6 days of nothing and then be in so much agony pooing it is like helping her through labour.

Apparently this can be another form of reaction in kids with FPIES and my dietitian wants me to get Abbey off the goats milk formula. We are going to try soy formula first and just slowly add little bits of it to her milk until she is having a full bottle.

We are really hoping she doesn't react to this formula, but if she does there is a type of formula called Pepti-Juniour for kids with protein allergies and we will have to get her onto that. I did try that with her back when she was 7 months old and she hated it! I tasted it myself and it tasted like poison. So hopefully she will be ok with the soy formula and not hate that too much.

After we have gotten her onto another formula and if her poo is back to normal we will start trailing her with solids.

I am so happy to finally have a plan. But i am also petrified. Soy can be a huge trigger with some FPIES kids and because Abbey has never had it we have no idea how she will react. I am going to give her some later this afternoon when she has her next bottle and i am really hoping it doesn't end up in disaster. Eeeekkkk

Friday, 23 March 2012

It's so hard to know

Right now we have a sick little munchkin. She started being really unsettled on Wednesday and her nose started dripping. By night time though she was having huge screaming fits and just wasn't going to sleep. Finally at 9pm she seemed to have settled properly and i decided to go to bed too.

I'm glad i did because from midnight onward i defiantly wasn't getting much. Abbey woke up and screamed blue murder for an hour. She was in obvious pain, wriggling like crazy and throwing herself around. She just didn't know what to do with herself. It really looked like she was reacting to something but with gastro going around i started worrying that she was getting that. I also hadn't given her any food and i hadn't found her eating anything off the floor. The rest of the night she would sleep for 5 minutes and then scream for about half an hour and this just went on and on.

By Thursday night the diarrhoea had started and she still was very miserable and having random screaming fits. Since finding out about Abbey's allergies i have become an expert poo inspector. It usually has the answer i'm looking for. Reaction or just teething? Has she eaten something i didn't notice or is her poo normal? Well this time i found my answer with 2 tiny pieces of grated carrot staring me in the face.

It's times like this i have to try stop myself from feeling guilty. We had salad with grated carrot for dinner on Wednesday night and obviously i had dropped some pieces on the floor without noticing. I wish that i had super powers to spot every bit of food that has landed on the floor so that i can clean it up before Abbey gets it. But believe me when i say, she is the one with super powers for finding dropped food! She spots it instantly and will hone in on it in a heartbeat. I can never get over how quick she is, and then a huge battle follows to get it out of her mouth! Abbey having teeth now doesn't help. She can chomp down pretty hard with those pointy things!

Well anyway back to the story. I had my answer with the carrot but i was still wondering if gastro still was the main cause and in a way i was waiting for the vomiting. But it never came. Although not going to sleep till after 10pm on Thursday night and still having random grumpy/crying/screaming times she pretty much slept fine for the rest of the night.

On Friday morning i decided it was just a reaction to the carrot and i was thankful that she didn't get gastro. She still wasn't herself on Friday but having a bad cold probably didn't help with that. During the day though she got into my nappy bag that was in the laundry cupboard. She is getting taller now and things she couldn't reach before she can now. I wasn't that fussed though as she was having fun and i didn't think there was anything in there that could cause any problems. Well i was wrong. i had forgotten to take out Connor's drink bottle and unfortunately it still had some juice left in it. (probably starting to ferment YUCK) I hadn't seen her drink anything and was hoping so bad she hasn't but we found out a few hours later that obviously she had. So we had another night of screaming and diarrhoea.

Its always such a guessing game as to what could be wrong with Abbey when she cries. But i am thankful that when she isn't reacting to something she is the most perfect baby out so it does make my guessing just that little bit easier.

                                                 Here is my poor sick little girl

Lets start at the beginning...

To start this story I really need to go back to the beginning and give you the history of Abbey's life.

She started out as a very chilled out baby for the first few days. But she did have jaundice so we expected her to get a bit livelier. By the end of the week she was screaming lots at night and waking every half hour to an hour. She was also doing lots of spitting up. At first we didn’t think much of it she was only a tiny baby and they often suffered from colic. We expected it to get better…it didn’t.

When she was 2 months old I saw a doctor thinking she might have reflux. They suggested I try putting some rice cereal in her milk and see if that helped. That afternoon I expressed and added a little bit of rice cereal to my milk and fed it to her. That night was one of the worst of our lives!! She started spitting up like crazy and she was completely inconsolable for 4 hours until she eventually passed out from utter exhaustion. I was in tears feeling so bad for her that she was in so much agony. It was awful! We never tried that again!

We still didn’t really think much about her spitting up and screaming other than that it could be reflux. I tried raising her mattress on a 45 degree angle, burping her lots throughout feeding and holding her on a 45 degree angle while she fed but nothing improved it. 

She was still 2 months old when I took her to see my chiropractor as I had heard that they can often help colicky and reflux babies. He checked her over and she was pretty much fine everywhere, but he suggested I cut dairy out of my diet to see if there was an improvement. There was! He also suggested not to feed her any soy as she might have a milk protein allergy which is common in babies and soy also can affect them. The improvement wasn’t a miracle cure but things did seem to be a little better for a while. I just found it really difficult to not eat dairy and I slipped up heaps. 

When she was 4 months old I thought I would try her with solids thinking that maybe the night time screaming was due to being hungry. It’s so hard to know if I was feeding her enough with breastfeeding. We started with rice cereal and things went from bad to much, much worse! She basically wasn’t sleeping at night, and she was spitting up so much she was soaking 6-8 spew cloths a day and needed to have a change of clothes often 3 times a day. She also got really bad diarrhoea and would have poo explosions where the poo would end up all the way up her back and into her hair. It was bright green in colour and was a bit mucusy. We stopped that after looking on the back of the pack and realising it had traces of dairy. I bought another brand without dairy but that didn’t help anything. Things just got worse every day. She even started all the screaming during the day. After a week we stopped the rice cereal. Over the next two months we tried different foods on and off but everything just seemed to make her spew more and scream worse at night.

By the time Abbey was 6 months old I was a complete mess! She was usually ok during the day, but come night time she was a changed baby. She would go to bed at 6 most nights but then always wake half an hour to an hour later and then scream and scream and scream. This usually lasted till 11 or 12. Then once she finally fell asleep out of complete exhaustion she would still wake me between 4-10 times. 4 was a REALLY good night and 10 was the most common. She couldn’t sleep any longer then a 2 hour stretch and she would often have a few hours of inconsolable screaming. I was totally and utterly exhausted! 

I started seeing doctors again and was going every week. The first time she had an ear infection so we thought that was the problem. She was given amoxicillin and reacted REALLY badly to that! She couldn’t even sleep 10min straight without waking in obvious agony. She got diarrhoea really bad and an awful nappy rash. By day 5 I couldn’t handle it anymore so stopped giving it to her. We saw the doctor again and he said it sounded like she had reflux but he didn’t want to prescribe medication just yet. He wanted me to try raising her feeding position again to see if it helped. It seemed she did a bit better for 4 days but then things got bad again.

I saw a different doctor and while we were there Abbey did a massive projectile vomit and the doctor said it seemed like she had reflux. (what everyone was telling me) They prescribed Abbey some medication but it made no difference at all.

A few days before she turned 7 months I decided to take her back to my chiropractor as I had heard that he also did allergy testing. I brought along a sample of my breast milk, some cows milk and some corn as I had been feeding her a baby food jar with corn in it and she had been spitting up extremely bad and screaming even worse. Well the test was done by surrogate muscle testing. http://naethawaii.com/muscle-testing/ All three samples showed that she was allergic or intolerant to it. When I got home i got Reuben to help me with the testing and we tested food after food and it seemed she was intolerant to almost everything! I decided to immediately give up breastfeeding and tried to feed her a formula designed for babies with protein allergy. She hated it and refused to drink it. At 1am the next morning after she hadn't eaten anything i decided to just go with the goats milk formula i had in the house. She gulped it down! The next morning we tested it and are still thankful to this day that she can handle it! It is very unusual to have a milk protein intolerance and be able to handle goats milk as the proteins are very similar. But we aren't complaining! 

Over the last 6 months we have made a few mistakes with the allergy testing and have realised she often has build up reactions to food too. We will do the allergy test before we feed her something and it will test fine but then we will notice the spitting up and screaming starting again and redo the test and it will say she is allergic to it. We have still had heaps of reactions. Especially to food she picks up off the floor. Even the tiniest amount can cause her to react and sometimes she doesn’t even have to swallow it. 

But now we finally have answers to all of our questions. I am so thankful that we decided to go to Princess Margaret Hospital to see an immunologist who diagnosed Abbey within 10 minutes of being in the room. Her classic list of allergies and her symptoms didn't leave much to the imagination. Before the diagnosis i already guessed Abbey had FPIES but getting it clarified by a professional was a great feeling and knowing that we are going to get help from now on is also really nice. I was a bit scared that they wouldn't diagnose her as she has never had the violent vomiting reactions to food and that is usually the main symptom. But FPIES is still very unknown and doctors are only now slowly finding out all the different variations of it. Abbey has vomited a few times from her reactions but her symptoms are mainly the diarrhoea, spitting up and non stop screaming in pain. 

So there you have it, a summary of Abbey's first year. Now if you are interested stay tuned as I wait to hear from a dietitian and we start with food trials. Although a few weeks ago she had 6 foods that were safe for her - wheat, apple, pumpkin, cauliflower, honey and sugar. After a few bad reactions in a row her stomach is a mess and she is sadly back down to none being safe anymore and has been living off a diet of only goats milk formula for the past 2 weeks. I am terrified to try anything new, as i know we will lose lots of sleep and worse of all Abbey will probably be in a lot of pain but i am really hoping we can add more to her diet.