Thursday, January 21, 2016

FAILSAFE: Our experience Part 1: Diagnosis

An introduction:
In July 2015 the Lord allowed me to make contact with a fellow home schooling Mum (who also happens to have 5 children). I had shared some of the struggles that I was having and she suggested looking into the FAILSAFE diet. I did a lot of reading and research and in the middle of August we got started.

For my brief explanation of the diet, you can have a look here.
From here I will just refer to FAILSAFE as FS and Salicylates as sals.

We decided to do a strict elimination so that we would have clearer results. There are a few items that are FS, but we were either advised to keep out (like rice), or choose to (like wheat and then sugar). These choices did make it a bit harder, but we were glad we did.

Some of the REASONS for starting the diet were:
Belinda - depression.
Brendon - migraines.
Ruth - withdrawn.
Hannah - anger, hyperactivity, dyslexia, nightmares.
Hezekiah - eczema, nightmares, wetting bed.
I also noted that myself, Rachel and Ruth all struggled to get to sleep at night.
And there seemed to be a lot of fighting / arguing between the children.

I will make the note here that we saw improvement in all of these areas. Food was indeed the cause for all of these "symptoms". For those who would like to know how we worked this all out, I have finally gotten to write out our journey to diagnosis. We made mistakes and learnt along the way. It was eventually very clear to us though that we were so much better off on the FS diet.

At the time of writing this, we are still to find the trigger for Hezekiah's eczema. Since starting the diet he has not struggled with his eczema at all.

Belinda: I had struggled before with PMS, but it was becoming worse and I was having days that I would describe as horribly dark. Days where I wished I'd never been born. And these emotions would hit me so quickly. I could be fine and then one simple, silly thing would just break me. Now I felt like I was regularly in tears, feeling overwhelmed, a failure, and inadequate for my role as a mother. On reflection I realized that a lot of my depression was caused by the fact that I often just had such a short fuse and was getting angry so often. That irritability and lack of "self control" was causing me to feel so guilty and this guilt would cause me to just spiral down.

Now - after being on the FS diet for 5 months, I feel like a different person. There have still been the odd day here and there where I have been very irritable, but I can usually pin that to something that I have been exposed to (I seem very sensitive to strong smells). The difference now is that I will recognise that irritability as the reaction that it is, and I can put it behind me, knowing that I am going to feel myself again soon. So most of the time it no longer leads to depression. The only times over the last couple of months when I have felt depressed, are when I have eaten something that has had a very strong reaction. I recognise the negative thoughts for what they are though, and am more able to fight them because I know they won't last.

Note for those interested in the spiritual side of this. I will write a blog post on this and share the link here when it's done.

Ruth. On reflection we realized that what we described as "withdrawn" was possibly better described as depressed. She was no longer affectionate, was excessively shy when outside the family and didn't have opinions (we regularly hear her saying "I don't know" or "whatever" to questions of what she would prefer). She also internalized all her struggles and would not easily share. We would hear her crying at night and then eventually she would tell us through the tears what had been worrying her the whole day. And at the same time as all this, her back-chatting was at an all-time high.
I wrote to the friend: "I miss my affectionate and happy little girl."

Things are so different now. Ruth is affectionate again, and comes to sit next to us when watching a movie or praying (rather than always finding a spot away from anyone else). In general she is just so much happier. We have had some wonderful discussions over these last months and she is able to talk about her feelings more easily. Mostly, the only days that we have back-chatting is when she has eaten something that is not FS. We have also seen a great improvement in her relationship with Rachel. She is also much more confident around other people. It has been a real blessing to watch.

Hannah: Although not officially diagnosed, Hannah did have a lot of "ADD" type behaviour. Some would be: talk a lot, interrupt others and can't seem to wait their turn, call out in a group and may be known as the class clown, act before thinking, often easily upset, get angry and "explode" quite easily. So although people may say "that describes most children" the last two were the key issues. In 2014 Hannah gave her heart to the Lord and we saw such a change in her. Her heart was softened to the Lord and she had a desire to do right and to please Him. There were however still times when she would get so angry that she didn't want to do good. She seemed trapped in those negative feelings. And I could relate to that.

On the FS diet, those anger outbursts just don't happen if she is eating only FS food. She is happier and can cope with teasing. She gets along with her siblings and there are hardly ever major fights. Unfortunately she is very sensitive and her reaction can last for more than just one day. We have seen a wonderful improvement with her reading over the last 5 months and she doesn't have nightmares. We also noticed that she was not as hyperactive any more. We actually noticed the change in relationship with her and Hezekiah. Before the two of them would often be loud and wild. Now there were times we have to send Hezekiah outside to run around and instruct him to just "leave her alone" because she doesn't want to have the rough playing as much. They have adjusted to the new pattern well though and they do play wonderfully together. The days when there are regular problems between them, are always days after Hannah has had something that is not FS.

Asher: Although I didn't list anything that we hoped to see improved for Asher, we have seen that she is very affected by amines and sals. When she is on a full elimination diet, she sleeps through the night and is fully potty trained (even being dry through the night). We see very quickly that she is reacting to the food chemicals as she wakes at night and has a lot of accidents during the day (and is wet at night). It's been incredible to see. I know these things may not seem that important, but in my mind, they are. If her mind is functioning better (that she has full control of her bladder), then that would be the best place for her to be in with regards to getting improvement in her speech. We want her body working at it's best - and a good nights sleep also adds to that.

Our attempts at Challenges
We started with elimination on 12 August. I had asked the older 3 girls to do their own symptom tracker, as I didn't quite now how to do it for everyone. I kept track of myself, Hezekiah and Asher. This meant that I don't have great records for that first month and a half.

AMINE challenge: After 3 weeks on elimination, on the 3rd of September, we started an Amine Challenge. A challenge being when you re-introduce just one food chemical to see if there are any reactions. Foods that are rich in amines are cheese, chocolate, bananas and meat that is cooked for a longer time. We made a lovely oat flour, banana and chocolate bread that was delicious. And we enjoyed fried banana and egg (another of my favourites). I didn't have any specific doses that I was working on, but just tried to include these amine rich foods for everyone. The plan was to do this for a week. I don't even have notes on when the others stopped the challenge.

Belinda: On 5th Sep I had banana bread in the evening and had a headache afterwards. The next day it happened again. So I stopped the amine challenge (ie - went back to full elimination). Even though headaches was not a symptom that I struggled with - it was very clear to me that the headaches I was having were directly related to the amines.

Asher had been dry at night through the 3 weeks of elimination but started wetting her nappy at night on the amine challenge. She was also having more accidents during the day.

So Asher and I stopped the amine challenge (ie - went back to full elimination) before a week was up.

Rachel got a stress headache on the 5th Sep. She had dropped something in the kitchen and the stress (or fright) of it gave her an instant headache. She then realized that this has often happened in the past.

Ruth noticed that she was not sleeping well during the amine challenge and as soon as the challenge was over, she was sleeping fine again.

SALICYLATE challenge: On 12th Sep we started a sals challenge. Looking back I realize that we didn't wait long enough after the amine challenge. Some foods that are high in sals are apples, cinnamon, honey (those three ingredients going into our apple crumble), stone fruit (like lychee, apricots and mango), pumpkin, carrots, cucumber and pepper.

Belinda: On Monday (14th) I made oat flour cinnamon pancakes for dinner, enjoying a good amount of cinnamon on them (just the way I like it). On Tuesday morning I was so emotional. On Wednesday I felt fine but then in the evening we had pancakes again. On Thursday morning I was again so emotional and had depressing thoughts again. I had wondered if Tuesday's reaction had been related, but got clear confirmation on Thursday. I could feel that it was a physical reaction. Even though the symptoms were mental / emotional, I knew that what I was feeling was NOT the real me. So that was enough for me to stop sals and know that they were a huge aggravation for my depression.

Asher again started wetting at night on the sals and also started waking through the night. When I stopped sals, she was dry again and sleeping through.

Ruth noted having a very bad night while on sals.

Hannah: I made a few notes of Hannah getting angry through this time. Again - my notes were not as good as they were by the end of the month.

QUINOA challenge - by chance:
Asher: On Saturday 19th I started keeping track of what everyone was eating (specifically) and if there were any issues that came up. It was only because I was doing this that I noticed the clear decline with Asher's nights. She was getting more and more restless at night (as well as being wet). It got so bad that within 4 days she was waking 4 times through the night.

I went back and looked carefully at what she had been eating and realized I had introduced Quinoa. I had just asked about it and it was apparently FS - but I wonder if it has actually been tested. I had wanted it as an alternative for me to potato, and she loves it too. I suspected it was the problem for Asher's nights though and so cut it out.

The first night after stopping the quinoa Asher was dry through the night, and the next night she was sleeping through again. I was very thankful that the improvement happened so quickly. There was nothing else that changed through the week, so it was quite amazing for me to see how quickly the food was affecting her sleep.

RICE challenge:
At this point I made contact with a dietitian to get some specific help with challenges. She suggested we start using rice. So we did a small challenge with using rice flour in things and eating rice as well.

Belinda: It was very clear to me that I get headaches from rice. Again, I noticed the headache soon after eating the sausage rolls that we made with the rice flour (everything else used being FS).

Hannah reacted with anger. So although we really wanted to allow her to eat rice (as she likes cooked rice with milk for breakfast over oats) it just kept being a problem.

Ruth had an increase in back chatting.

Rachel was more irritable. She also associated the rice with stress headaches. We realized that often when she had things on (like St John competitions), she would have sushi for an easy "on the go" meal. She would often struggle with headaches on those days, so she has made the mental note to avoid rice around any stressful times.

With more than half of us reacted in some way, we decided it would be easier to just keep the rice out.

BLUE ICING nightmare!
Hannah: Although out of sequence, I will include this as one of our small challenges. For Hezekiah's birthday at the beginning of October we made the long awaited "blue dinosaurs" and although everything else was FS, the blue icing was not. And boy did we get to know about it. Poor Hannah struggled with so much anger. It got better every day, but it took her a good 3 days to fully get over it.
The picture to the right expresses very well what we experienced that week.

Guided Challenges
On the dietician's recommendation, we decided to re-do our amine and sals challenges. This time we had clear doses of exactly what needed to be eaten. And we now knew that we must have a good 5 to 7 days of no symptoms before starting the next challenge.

AMINE challenge:
Son on 1 October we started a proper Amine challenge. We chose to start now because Brendon had a migraine on 29 September. He generally has these every 5 weeks, so we felt this was a good time to start. If he had a migraine in the next 3 or 4 weeks, we would know that it was related to diet as it would be "out of the norm".

Just to give you an idea of the amine challenge; every day an adult would need to eat 2-3 large ripe bananas, 60-120g chocolate and 60-120g cheese. And you keep this dose up for 7 days and then stop. It's harder than you imagine. Eventually Rachel and Brendon were really struggling to get it all in. Hannah, Asher and myself didn't do this challenge. Even though I had not noted much for Hannah - it was obviously clear to us that re-challenging was not needed.

Rachel's irritability definitely increased on this challenge. She has decided for herself that if she has any stressful situation coming up, she will make an effort to avoid (or minimise) amines and rice.

Ruth's back-chatting increased so much that by day 5 we decided she had to stop the challenge.

Brendon seemed to do ok other than a bit of heartburn on 3 of the days. 7 days after the challenge stopped though, he got a migraine. This was only 2 weeks since his last one, so we felt it was indeed related to the amine challenge. Amines are often associated with migraines (and headaches as seen with Rachel and I). What makes it really complicated is the whole aspect of threshold. (See my Brief explanation linked above for more information on this.)

It is very possible that if Brendon had done the amine challenge for one more day, he would have gotten the migraine that day. It is possible that he was just under the threshold, and he was tipped over during that following week. The reason this is possible is because of our meat. For the first 3 weeks we were really strict with our meat and only ate meat that had been in the freezer for less than a month (and I made sure I bought meat that had been packaged the same day or the day before - from a butcher that cut up fresh meat every day). After those initial 3 weeks, I moved us back to our supply of meat in the freezer - which had been frozen in July - well over a month old now.

Hezekiah also seemed to do fine through the challenge, but during the week after the challenge, he was crying a lot more than normal.

SALICYLATE challenge:
After 9 days on elimination, we started the Sals challenge on 17 Oct. I decided that I would not even try to have any cinnamon but did enjoy the change of having different fruit and some salad things. I was not able to get the full challenge doses in as it was hard. An adult needs any 6 servings per day. Servings would be either: 1/2 - 1 a cucumber, 1 cup carrot, 1 cup pumpkin, 1 large onion, 1 cup sweet potato, 1 medium zucchini (with skin), 1/2 - 1 capsicum, 1 large granny smith or other sour apple (with skin), 150g stone fruit, 1 cup strawberries, 1 Tbs honey, 1 tsp cinnamon (or curry powder or other herb or spice), 1 cup of strong tea.

I found it hard to get the 3 servings in for Hezekiah too. At least Brendon and the older girls were able to dose up on the apple, cinnamon and honey in the apple crumbles Rachel made. It was an expensive week too (cucumber and capsicum not cheap at all - especially if 1 serve is 1/2 - 1).

Brendon felt the affects of this challenge by the end of day 3 and chose to stop. He had a headache after the cucumber he ate that night but the depression he was feeling was the main reason he just said "no more". It took a good week for his body to work through it and for him to feel himself again. This really stood out for me because Brendon doesn't struggle with depression in the same way I do.

Ruth struggled with back-chatting and being indecisive. So much so that by day 5 she agreed that she needed to stop.

Hannah struggled with nightmares and also with anger.

Hezekiah was very hyperactive through the week with a bit more crying too.

Asher started having more accidents (wetting her pants) during the day.

So that was our sals challenge done. More than enough reactions through the family for us to be happy to go back to the elimination diet. We didn't bother going through all the food additive challenges as there seemed to be so many.

GLUTEN challenge:
On 6 November Brendon had a bad headache. He had gone out without dinner and by the time he got back he was so overly hungry. He experience headaches in the past years that we realized were related to his blood sugar dropping too low, so we are sure this is what happened again. It didn't clear and he had to take his migraine meds. So we noted it down as a migraine. It had only been 3 weeks since his last migraine.

On Thursday the 19th of November we decided to do a gluten challenge. Rachel had just had her braces put on and her teeth were really sore. People had suggested soft white bread to eat, and so we decided to just allow the whole family to have a try (except Asher). It was also SO tempting to eat that lovely white toast, smothered in butter. The addiction side of it was an issue in itself, and I realized why so many people are struggle with weight control. Bread and butter a sure way of putting on unwanted weight. And the addictive quality of the gluten playing a major role in that too.

By Sunday the 22nd both Hezekiah and Hannah had terribly sore tummies and Hannah was struggling with a lot of anger. Ruth was moody and back-chatting and Rachel was experiencing a bit of "brain fog". Belinda: I was struggling terribly with getting to sleep at night.

Brendon: The worst reaction though was Brendon. He had such a bad migraine on Sunday night. Just 2 weeks since his last headache and worse than he has had in a very long time. He ended up having to take 2 of his migraine tablets as well as 2 other pain killers.

Smaller challenges:
Over the weeks we tried different things unsuccessfully. Adding just a couple of berries to a kefir smoothie, or trying some of the lovely sausages we had (the herbs ending up being an issue for a couple of us). Enjoying the cherries and chocolate that were given to us before Christmas. We even had a problem when we bought some potatoes that were on special and only realized after a few days of issues, that they were in fact yellow potatoes and not white (you can clearly see the difference when you hold them next to each other once pealed). The potatoes were really a surprise to me. Hezekiah was crying so much and had so much gas and I was struggling with irritability. As soon as I realized it and we changed, both Hezekiah and I had immediate improvement.

Our latest small challenge was yesterday and today, with Brendon's birthday cake. I decided to make a chocolate mousse cake and just see how we all did with the chocolate (the only non FS ingredient). Unfortunately Hezekiah had a nightmare and Asher had a terrible night, waking 3 times and just so restless the whole night through. So far we don't have any other clear reactions, but we only made half the normal size cake as we don't want to push things too much.

UPDATE at 7:30pm. Hannah has unfortunately not gone without reactions. The family (expect Asher and Hezekiah) enjoyed the last of the cake this morning and this evening Hannah just lost it for no reason, screaming and shouting at everyone. We got "I hate you" and "I don't care about anything". It's heartbreaking to see her struggling like this. Hopefully she will be feeling better in the morning.

As of today, Brendon hasn't had a migraine since that bad one on 22 Nov, a good 8 1/2 weeks ago. So this is the longest he has gone without a migraine in more than a year.

So that brings you up to where we are now. The other side of the story is what we are doing to try and get our bodies to cope with these food chemicals, so that we don't have to continue with the FS diet, but can start bringing other foods back into our diet. I will leave that info for the next post.

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