Challenge Failed

I have been a bit slack with the blogging. I apologise.

A few things have happened, Thali has been successfully babysat - twice! The Royal Children's Hospital have disappointed me - again! The dietician has provided a few new resources. And I got to eat a mango, and a carrot AND have a cup of tea! But most importantly Thali failed the salicylate challenge. 


After my last post Thali continued to improve. She was only waking once a night, at most, and would have a quick feed and go straight back to sleep. I was having success at getting her to sleep during the day which was incredible. So, after four days of her being really good we decided to start the salicylate challenge. To do this we had to pretty much overdose on salicylates (a natural food chemical found in almost all fruit and vegetables, as well as many other daily things like toothpaste.) I was advised to eat six, 1 cup portions of high salicylate foods a day. Thali was to eat as much as we could get her to. So I finally got my carrot, we shared mango, rockmelon and watermelon, overloaded dinner with pumpkin, sweet potato and capsicum and I got to drink lots of tea and apple juice. 
We started on a Tuesday, by Thursday Thali was getting sooky and clingy. We could see teeth coming through so put it down to that, her sleep was still ok after all. On Friday night she was a little more difficult to get to sleep, but then woke at 9.30pm. There was no resettling her. We had the old Thali back, she was rolling, kicking her legs, crawling around in her cot and looking at us as if to say "what? I'm not sleeping, it's party time!" After an hour of trying to settle her, I got her up. She played happily until I decided to try and put her down again at midnight. She went to sleep - eventually, she wasn't screaming but would lie there for 20-30 minutes or more just staring at nothing, if we made a move she'd start crying. 


On Saturday morning Rhys tried to put her down for her first nap. She went totally crazy. I sat on the couch and bawled my eyes out. I couldn't believe that the wild, inconsolable animal that was kicking, screaming and arching her back was the same girl from 3 days earlier. I couldn't believe that only two weeks earlier, this was 'normal' for us, what we did every day or that we had let it go for so long. I felt resentful that no-one could help us earlier, that we had seen two doctors at the Royal Children's, several GP's and nurses, sleep school staff, friends and family and no-one could help. I wonder where we would be if I hadn't joined an online forum and found a wonderful, supportive network of other mums - one other who was also on the failsafe diet. I couldn't believe that people were telling us to "let her cry it out" and "stop being so soft on her." This was not 'normal' baby behaviour, there was something wrong with my daughter - now I had an answer. 


We stopped giving Thali salicylates after that. Four days later she is still difficult to get to sleep, but has continued to sleep well overnight. She is clingy, sooky and temperamental during the day but is slowly getting better. Hopefully over the next few days things continue to improve further. Once we feel we have our happy, easy-going baby back we can start giving salicylates again. This time in foods that have a much lower chemical content and in a lower dose, so perhaps one of Thali's hand size piece of apple a day and see how she goes.  If she is ok we can increase - slowly!


Tomorrow my parents arrive from interstate to stay with us for three weeks. We also have lots of other things happening this month. The dietician advised holding off on challenges until things are back to normal for us and to keep Thali strictly to the diet but not be too hard on sticking to it myself. Thali may be able to tolerate the chemical levels through breast milk, there is no research as to how much of the chemical passes through, nor how long it takes to leave the system. I will stick to it as much as I can but I know that in some instances, like an upcoming wedding, I won't be able to. I went to the Hen's party last weekend and drank a glass of champagne, had chocolate mousse, coconut ice-cream and cake. It was glorious! But, I didn't have anywhere near as much as I would have, had I not been on the diet. It's all a big balancing act now. 


The dietician provided a list of foods and whether they fit into a low, moderate or high category of food chemicals. She also suggested we look at a cookbook called 'Friendly Food' it is put out by the RPAH in Sydney and looks very impressive and inspiring. We are currently using the 'Fed Up' cookbook by Sue Dengate which although it has a lot of recipes and good information it's doesn't have a very good lay out and no pictures. I'm looking forward to some new ideas now that it looks like some variant of the diet will continue long term. Once we have worked out Thali's tolerance levels things will get a little easier, and as she gets bigger her tolerance levels will increase. Unfortunately there is no simple test, no immediate reaction, no one size fits all solution, but this is our answer. 

This is a new Thali that we are so excited to see more of.

Success!!

That's right. The last four nights have been fantastic! Thali has still been a real pain to get to sleep but once she's asleep she has been waking once between 3-4am for a feed and falling straight back to sleep.
We can brush our teeth, flush the toilet and go to bed without waking her. Rhys can get up and ready for work without waking her. It is truely amazing. Whether it is the diet or she has just grown out of it, I don't know. But, to be honest, I don't care either! We have sleep.

Now we need to work out how to get her to go to sleep easier and things would start looking really good. At the moment I still can't get her to sleep, so usually she has her day sleeps in the car. I would love to be able to stay home one day, put her in her cot and have a whole entire hour to do what I like. (Probably sleep!)

This success has come just in time, the thought of another egg sandwich, pancake or french toast is making me feel ill. The feeling of hunger makes me depressed as the options are getting very, very boring. Dinner isn't too bad, but I have always been bad at deciding what to have for lunch and this makes it a whole lot worse. A cup of tea or glass of wine would be heaven right about now. Avocado, chocolate and carrots are also high up the list. I'm not going to delude myself, there is still a long way to go before I am free to eat what I like, but I can see a light at the end of the tunnel and that is something.

We have decided that if Thali is still sleeping well by Sunday we will try to re-introduce something. We're not sure what yet as we haven't done much reading on the challenges, but something.

We have an appointment with the Royal Children's Hospital allergy unit next Wednesday. A referral was sent months ago, before we had considered failsafe, as we knew tomato was playing havoc with her (she would get rashy) and thought we might as well go speak to them to see if they could offer any solutions. I am hoping like crazy that they are supportive of the failsafe diet and will give us some support. We then have our next appointment with the dietician the following Monday.

Rhys has decided to stop the diet. He hasn't seen any great effects in his own health and irritable bowl symptoms. He is pretty sure his triggers are coffee and alcohol - two things his not willing to give up. But it is only he that needs to deal with those consequences. He asked me to get him some ham at the supermarket, I asked if he wanted apples and tomatoes too. He said only if it won't drive you crazy having them in the fridge. He still fully intends to continue the failsafe diet at home. Having a physically demanding job and high metabolism he was finding the diet a bit hard to stick to at work. As long as he doesn't start drinking wine and eating carrots, I have no problem. I know he will still support Thali and I with the diet wholeheartedly.

Tonight we have a babysitter. The first person to ever attempt to put Thali to bed. I fully trust Jen to not get flustered, not let Thali get too upset and call us when she decides it is just not going to happen. We will all have dinner together and bath Thali. Rhys and I will then head out for half an hour and leave Jen to do her thing. If she's not asleep by then Rhys will put her to sleep and then we'll go out for a few hours. If she wakes Jen will try to resettle. Hopefully, the night won't be too stressful for Thali, Jen or us!

Tea Please, with a side of sleep?

Today Rhys ate a macadamia and chocolate cookie. He then thought it would be a good idea to tell me how fantastically delicious it was. Not Cool!  :(

Yes, we're still pushing through.
No, I haven't blogged all week because quite simply I've been exhausted.

Last night was particularly bad with Thali waking every two hours and then deciding 4am would be a great time to start the day. Generally I would say she has been quite happy during the day which is an improvement. The sleeping is still no better though. This week has been particularly hard on me as I simply cannot get her to sleep. Having my baby girl screaming and thrashing in my arms is simply heart breaking. There is nothing I can do to calm her, other than feed her. Often this means I cannot transfer her to her cot either as she wakes unless I do it at exactly the right moment.
Rhys went back to work on Monday and I was a babbling mess by Tuesday. I have lost all confidence in my ability to get her to sleep. Which means my persistence is virtually non existant. I know that she won't sleep until I believe I can actually do it, I won't get that confidence until I can get her to sleep. Stuck - and too tired to do anything about it. 

Last weekend we had a party at Rhys' brothers. I packed snacks, meat, salads and even our own slice of cake (so we didn't miss out on birthday cake.) Our potato salad and coleslaw was devoured and enjoyed by all. Rhys had a few Gins, I had a vodka. The only real 'test' was when the roast pork was put down smack bang in front of Rhys. He just sighed. All in all a very successful evening.

We went to see a dietician on Wednesday night. She agrees that the failsafe is definitely worth a go with Thali. She has been through all this with her own son and it was nice to have someone else say, "no-one really understands what it's like, until they too have a baby like this." She didn't brush of my very alert, attention seeking description as a 'normal baby'. It was a very comforting appointment. She said that so far our food diary looks great and that we don't appear to be making any mistakes. So now we keep going as we are for the next 2-3 weeks. Before we can challenge (reintroduce food) we need Thali to have 3-4 good days in a week.

Our next big hurdle is two bucks parties for Rhys and a hens party for me. Then in Februrary we have my parents staying with us for three weeks, a week away, two weddings, a formal dinner and Thali's first birthday. I think it will be safe to say that the diet will be out the door next month. The dietician advised to keep Thali on the strict diet and not to stress too much about myself. It's all about trying to keep Thali's levels down. So, the small amounts she gets through breastmilk won't have as much of an affect as they would if her levels were already high.

I don't think Rhys will be sticking with the diet much longer, he hasn't been noticing big differences in himself and is missing his food. Me, I just really want a cup of tea - and some sleep.

One Week In

Today marks one week on the Failsafe diet.
Last night Thali woke at 11pm and.... SELF SETTLED!!!  She also woke at 4am, I fed her and she went straight back to sleep. This is the first good night in months. However, we're still too exhausted to care. We still just want to go back to bed. We're also not taking it to mean anything, a couple of weeks ago she slept for 6 hours in one go, but the next night was back to craziness, so who knows what tonight will bring.

Most nights still go something like like this. Down at 7.30pm, awake at 9pm (20mins to resettle), up at 11.30pm (2hours to resettle), up at 3.30am (2hours to resettle), up for the day at 6.30am.
So there's not a whole lot of sleep going on there.

Her day sleeps have also improved and 1 hour naps are becoming 'normal' which is quiet incredible. Again, we're not taking this to mean anything as she could just be worn out from the lack of sleep overnight.

How are we going with the diet? Well, OK. It's certainly not fun, but it is not horrendous either. Rhys is finding it much more difficult than I am. He would kill for a beer and some bacon. Surprisingly I really want, of all things - some carrot! Weird, I know. We went to visit a friend yesterday who offered Rhys a beer, and then a huge bag of avocados for us to take home. We nearly cried.
There are a couple of meals we have made that will survive 'post diet' like chicken and fried rice, and a golden syrup pudding. Others like risotto and stir fry are a bit bland when you can only add leek and beans.

Tonight we are off to a birthday party with Rhys' family. It will be interesting. Usually parties with them involve delicious food, great wine and plenty of beer. Having to sit back and say 'no thanks' could prove difficult. We are taking along some meat, coleslaw and potato salad, as well as some snacks and gin. Hopefully it won't be too torturous for us.

Next week we are booked in to see a 'failsafe friendly' dietician, not all dieticians know of or are supportive of the diet. We will take in our food diary and discuss behavioural changes with them. They may want to tweak some of our allowed foods, and then if we continue to see results they will guide us on how to reintroduce foods through challenges. I think we'd like to reintroduce "Amines" first, if we can - cheese, chocolate, avocado.... Yum!

One thing we haven't done strictly is change our skincare and cleaning products. I have looked in a few different places for recommended toothpaste but can't find it. We don't use many cleaning products so I haven't changed them yet. Shampoo, conditioner, moisturiser is something I should change, but I'll wait to see what the dietician says.

On Monday Rhys will be back at work, neither of us are looking forward to it.

What is the FAILSAFE diet?

So, you know why we're doing the diet, and how we got started but I'm sure some of you are wondering what the diet is EXACTLY.  I'm going to start by saying that I am in no way an expert. I have wandered around a website, read parts of a book and spoken to a friend who is following the diet -not really thorough research by anyone's standards! So if you really want to know more and understand it fully I'd advise you visit a couple of websites:

- http://fedup.com.au/

- http://www.sswahs.nsw.gov.au/rpa/allergy/

And read: Fed Up by Sue Dengate

 In simplistic terms FAILSAFE is the Royal Prince Alfred Hospital Strict Elimination diet. It is a diet that is free from artificial colours, flavours, preservatives and most food additives. It also excludes, Salicylates and Amines - naturally occurring food chemicals. 

Salicylates are natural pesticides that many fruit and vegetables have in high concentrations, particularly in their skin. Foods high in salicylates include grapes, spinach, most fruits, teething gels and nurofen.  Amines are a byproduct of the breakdown of food and are high in tropical fruits, meats, cheeses and dark chocolate.

For the first 3 weeks you need to stick to the diet strictly. Our shopping list is:

Fruit: Pears, fresh and tinned (in syrup NOT juice)

Vegetables: Potatoes, chives, garlic, swedes, chokos, red cabbage, mung bean sprouts, bamboo shoots, parsley, green beans, celery, cabbage, Brussels sprouts,iceberg lettuce, leeks and shallots.

Meat: Chicken, Beef, Fish and Lamb

Dairy: A2 Milk, natural yoghurt, cream, butter, cream, cream cheese and ricotta

Other: Eggs, oats, flour, white sugar, pretzels, scotch finger biscuits, saladas, tin beans, Plain Kettle chips, pasta, rice, raw cashews, golden syrup and plain ice-cream. 

We make our own bread, biscuits, cakes and muffins. We have also made dips and mayonnaise.

That is pretty much it, the list seems long but when you think about what you would normally buy - and look at it all in one place. It really isn't much, and it's ALL green or white.

When it comes to drinks you are limited to water. Tap, bottled, mineral, soda. Occasionally tonic or plain lemonade for special occasions. Decaf coffee and milk are also allowed, as well as Gin and Vodka.

Personal care and cleaning products are also limited as most scents contain salicylates. Toothpaste, moisturiser, dishwashing liquid and air fresheners all need to be carefully considered.

The hardest thing about the diet for us has been that it goes against everything we know to be a 'healthy, balanced diet'. How can a carrot be bad for you? Why can I have white sugar but not raw? How can decaf coffee be allowed but not herbal tea? Thankfully we haven't had to explain our choices to anyone yet. But I'm sure it won't be long before we start hearing "a banana can't hurt", "what do you mean you can't eat tomato?", and for Rhys I'm sure the worst of all "Just one beer."

We won't be on such a limited diet forever. This is set in stone for three weeks, after this time, and after our consultation with a dietician and our GP we can start 'challenges.' I haven't read up on the challenges just yet as we're not at that stage. But, basically we can start introducing things one by one according to their 'category'. It's not a simple matter of eating peas and saying an hour later - "No reaction, we can eat peas again," you need to give a certain dose over a period of time to look for reactions. The FAILSAFE diet does not look at allergies, it is not an immediate reaction. Rather it looks at intolerance. Everyone will have a different tolerance level to each chemical and additive.

We need to work out what our limits are and how they effect us. So yes we may not break out in hives from eating a few bananas, but after having one every day for a week, we may find that Thali's eczema flares up. Are the bananas worth the eczema? After eating tomatoes three times a week, we may find Thali's sleep gets difficult again. Is it worth it? That is totally up to us to decide - and to deal with the consequences. Others may not understand the choices and they may not agree. But in the end it is our family, our lives and our home, We need to look after that - not what others think. And if they begin to see a relaxed, easy going Thali, a healthy, bright eyed Rhys, and a happy, energetic me - how can they argue?

If you would like to read a story of someone who has followed the diet and had success you can read Jen's story here  http://myfailsafejourney.blogspot.com/2012/01/failsafe-why-do-i-do-it.html

There are also many personal stories on the fed up website listed above.

Hot and Bothered

So things are getting a little blah now... It's been really hot this week, with the worst of it yesterday. We had planned on making a beef stir fry for dinner but Rhys was sick (he does majority of the cooking) and it was just way too hot to bother. So we just had crackers and dip instead. Not very inspiring!

Tonight was burritos. Leek, beans and mince with some sour cream on mountain bread. I just remembered how much I dislike leek :(  However, we did discover that Thali really likes beans so that's a plus.

Rhys has been feverish, fluey, achey and lethargic. He thinks he's sick - he always seems to have a cold or flu which is why he is on the diet. I think it may be withdrawals, but I'm not sure if fever fits that explanation. Either way he seems to be feeling better tonight, thankfully.


I have found that my sense of smell is in overdrive, there was a man in line on front of me today with aftershave on and I couldn't believe how much it hit me. Walking past a nail salon made me feel physically ill, even frying garlic for dinner gave me a headache. They say this is common when starting the diet.

Thali's behaviour has been quite good. It is always easier with both of us at home, but she has frequently been  playing by herself which is fantastic. She also slept for 1.5hours this morning without once waking up!! Now that was amazing. We can't remember the last time she napped for so long. However, she did wake every two hours overnight so she may have just been a bit worn out. Getting her to sleep at any time is still a mission with, which I have absolutely no success. Rhys would probably love to get paid for his 'ssshhhhing' expertise.

The plan of attack for the next few days is to do some more cooking so that there is always an easy meal in the freezer- pies, quiche, cakes and meat for sandwhiches are on the list.

 
The next few days will be a real test. With the limited food options getting boring, withdrawals kicking in and a party on Saturday I really need to remember to be patient, forgiving and kind. Lets see how we go.

The path to now

So you may have gathered that Thali's sleep (or lack of) is our main reason for trying the FAILSAFE diet. The decision wasn't made lightly or with ease. It also wasn't our first thought, nor our last resort.

For the first 8 weeks Thali was a dream baby, fed well, slept anywhere was very easy going. At 9 weeks all that changed, she stopped sleeping easily, was feeding constantly and was generally pretty grumpy - but she did start sleeping through the night. We had lots of helpful advice, from growth spurts, to developmental stages, to the eternal "teething." We knew something wasn't right but everyone said she's growing, she's alert, she's fine.

It wasn't until a checkup with the nurse told us she'd only put on 65grams in a month that people finally sat up and listened. We were advised to try sleep school as it was near impossible to get her to sleep during the day. I went for a day stay, I really didn't want to, but I went. At 9.30am we went to put her down for a sleep - giving her a feed first. Every time I put her down she would scream. Feed her again I was told, and again, and again... Eventually at 11am they told me she's hungry that's why she won't sleep. Go home, give her formula. I was devastated. Imagine being told you have been starving your baby for weeks.  Until we got the feeding sorted and her weight gain back up we did whatever it took to get her to sleep and keep her happy. Usually this meant carrying her in a sling, driving in the car, feeding to sleep and letting her sleep on us. After much support from my local ABA councilor and a lactation consultant we got the feeding sorted out and back on track. (We are still breastfeeding now at 10months.)

However, I never got that happy, easy going baby back. She has never since fallen asleep without a lot of assistance from us. She is also very high maintenance. Trying to explain that to someone who doesn't know you makes you sound like a complete idiot. She's a baby - of course she needs you 100% of the time. I know that, I'm not an idiot. I also know that she isn't like other babies her age, people that see her regularly agree that she needs a lot of attention - more than 'normal.'

We have spoken to nurses and doctors, spoken to friends and family. Had an appointment with the Royal Children's Hospital and done a full weeks stay at a different sleep school. No-one has been able to help. If I hear one more person describe my daughter as cheeky, alert or determined I think I will go into meltdown. I know she's alert - she's too alert. The poor thing can't relax, help us!

To get her to sleep I usually have to feed her or go for a drive. Sometimes I have success with patting and sshhing but then I can't leave the room. Rhys has more success at getting her to sleep in her cot but it still takes 15minutes at best, 40minutes or more, is more common. And then we have to get out of her room without making the floorboards squeak, or the light switch 'click'.  Then when we want to go to bed (our room is next to hers) we have to tread the boards again and try to slide between the sheets without a noise - yes even the rustle of sheets will wake her!

Let her cry is the common suggestion from friends. Although I have no problem with those that choose to do that, it's not something I can do. I also don't think it will work for our daughter. Every child will respond differently to any parenting choice. This is not one I believe Thali will respond well to. Yes she grizzles and fusses and will often scream for 10mins while we leave to compose ourselves, but leaving her to cry on her own when I can go and hold her seems unnatural to me. This is my baby, the little girl that has made me experience love and adoration like never before, the cheeky girl whose giggle I could listen to all day, I'm not being too soft on her, I'm loving her and I'm wanting to make things better for her when there is obviously something wrong. We just haven't worked out what that is yet. That's our problem - not hers. 

Finally it was a friend from my online mothers group that pointed out all the similarities between our babies and how well the diet was working for them. I read up a little and decided it was definitely worth a try. I spoke to Rhys, after our fourth terrible, sleepless night and he was also willing to try anything. We have hit breaking point, with Thali often taking an hour to settle, waking frequently and thinking 10pm-2am is party time something needs to change. Hopefully this will be the turning point, and if it's not I'll keep looking...