D-DAY! Diagnosis Day… choices to be made and the surprising grief that followed.

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D-DAY! Diagnosis Day… choices to be made and the surprising grief that followed.

I’m heading back to our Autism journey, back to the summer of 2010.  Since ‘the dark winter’ as I call it, of 2008 we had seen many consultants, registrars, speech & language therapists, other therapists with fancy names, Autism Advisory Teachers and Child Development Practitioners.   Today, we thought was going to be just another appointment with the consultant… the one we finally found that took us seriously, who could see that there was something not right and recognised a link between diet and the brain.

We’d already seen Dr McGreggor several times where she assessed Ellie’s behaviour, how she played and interacted and took a ‘progress report’ from us.  What we weren’t expecting was for her to offer us a diagnosis.  It had been two and a half years since we started this journey and now my heart was galloping at what she was about to say.

“Ellie is certainly on the autistic spectrum and I would say she has high functioning Autism.  I would say she is borderline, and with that, you don’t have to take the diagnosis, if you’d rather not?”

I heard the words, I nodded, but it was like one of those outer body experiences.  Were we being asked whether we would like to take the diagnosis?  WTF!

The consultant went through the pros and cons (of which I just don’t remember now) but one was that with a diagnosis, we would be able to access better support.  If having a diagnosis meant a better chance of getting help, then there was no question.  Whilst I would’ve loved to stick my head in the sand and pretend this wasn’t happening, it really wasn’t an option.  Ellie was still the same little girl, with or without a label.  Plus, she had only just turned five years old.  We had no idea how things would progress and change as she got older.

Looking back, I know it was the absolute right decision to make, as things really have changed as Ellie has grown up.  For one, there seems to be an ever increasing gap between her and her peers and she continues to have a 1:1 support at secondary school. I’m sure this wouldn’t have been the case had we not made that choice.

The consultant also agreed that diet had played a huge part in Ellie’s symptoms and confirmed that if we had not changed her diet when we did, she would be in a very different place by now.  The relief to hear that was immense.  Thank god we did what we did and took those ‘poisonous’ foods out.  I won’t lie, back in 2008 it was really hard work as the mainstream supermarkets had barely anything ‘free from’.  My family, especially my mum, played such a huge part in making those dietary changes… it would’ve been so much tougher without them.  I fear, that we may have even given up if it wasn’t for their support and understanding.

So, we decided to go for the diagnosis – High Functioning Autism (or Aspergers), although on our letter it actually says ‘Allergy Induced Autism’.

What I didn’t expect was how I felt in the coming weeks.  Instead of relief… I felt grief.  I definitely went through a grieving process for a good two weeks. Grieving over the daughter we thought we had, worrying about the things she wouldn’t be able to do, fearful for how she would ‘fit in’ with her peers and unsure of where this journey would take us next.

Until next time,

Love and Hugs xxx

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Rice, Rice Baby! What happened when another food becomes a bad guy!(Blog#14)

So, lets get back to the story.  If I’m honest, most of the summer of 2008 was a bit of a blur.  We had returned from Florida, which went ok considering how poorly Ellie had been in the previous months.

There’d been doctors appointments (but that’s for another blog). We’d also decided that we wanted to try for another baby.  I remember this news shocking my mum as she felt that now wasn’t the best time to be thinking about trying for another child with everything that was going on with Ellie.   Why would we want to risk having another autistic child? What if Ellie didn’t get better?  I knew that’s what she was thinking.

Ellie had been following the diet for six months now and we felt we were getting a handle on the situation (how naive!) and considering our past complications with not conceiving in a previous life (that’s a whole other story!) we figured we may not be as lucky to get caught again anyway. Plus, we couldn’t see ourselves just having the one child – I certainly didn’t feel like I was done with the whole babies and pregnancy thing.

So, with a possible pregnancy on the cards, we decided to book a little getaway for ourselves to New York (ok, not that little) in November – at the earliest, I could be in the early stages of pregnancy – and if we didn’t do it now, we might not get around to it.  Mum and Dad kindly agreed to have Ellie while we were away.

So, lets fast forward to late November.  I was 12 weeks pregnant (wooo hooo!) and we were going to New York in two days  but for the past week Ellie really hasn’t been very good.  A lot more moany and any little instruction was met with confusion and meltdowns.  Simple things like ‘sit down’ and ‘put your coat on’ was lost on her.  It was clear to see that she was starting to regress again.

So, in a panic we made a quick dash to the Kinesiology lady that did the weird stuff with little bottles.  Once again, I held Ellie’s hand whilst she sat on my mum’s lap and I raised my arm up (and sometimes not) each time the lady put a little bottle of something on my cheek.  I didn’t know what was being tested and neither did the Kinesiologist but it turned out that along with the usual suspects, Rice was now a bad guy!

WHAT!! Something else we now had to eliminate!  When we thought about it, Rice was in a lot of what Ellie was eating as a substitute to the wheat and gluten so she had now become intolerant to it.  That seemed to happen pretty quickly with Soya earlier in the year which we were warned about from the York Test Nutritionists on one of our telephone appointments.

This was not great timing.  We were due to go to New York in less than two days, we now needed to sort through what Ellie could eat while we were away. Thankfully, Mum was ‘on it’ even quicker than I was.  She had everything sorted out ready for when we went and assured me that Ellie would be fine.

So we went to New York and had an amazing time – apart from feeling absolutely shattered from walking for 10 hours a day and growing a baby… and not being able to enjoy a beer in a New York bar 😦   We rang home often to check on Ellie and was assured that everything was fine.  Apart from it wasn’t.  Mum and Dad had taken Ellie to visit my brother and his family for the weekend and whilst she was there she was extremely upset, and unsettled… they just didn’t want to tell us while we were away.

By the time we got home the following Wednesday Ellie was just coming out of this withdrawal period and was starting to follow things a little better.  Mum knew that had we known how bad she was on the Saturday before we flew, we may not have gone.  We couldn’t believe the effect food had on her.  Once again, Ellie had become intolerant to something that made her regress.

Thankfully, over the months, we managed to reintroduce Rice back into the diet.  We now knew that too much of anything could cause Ellie to become intolerant.

For this last year or so (2016-2017), we have become a little more relaxed with the diet. Back in the day we were so anal – making sure there could be no contamination of wheat or dairy. However for a while now, we’ve allowed the odd bit of chocolate or a burger if we’ve been out and stuck for food options and some cheese on her gluten free pizza on ‘Pizza Friday’!

I have noticed recently though, that some of Ellie’s behaviours have become more extreme. She is getting easily confused, not understanding what I am saying, extreme mood swings and slurred speech. Of course, this could all be the process of becoming a teenager (god help us!) but when you have a feeling in your gut (excuse the pun!) you need to act on it.  We’ve already had a Kinesiology test which is great if you want an immediate answer, but it revealed 11 different foods!  We needed something more conclusive (ie; whether something was severe or borderline) – so yesterday, YorkTest received a small blood sample to get Ellie re-tested for food intolerance … so now we wait! :/

For more information on YorkTest visit: http://www.yorktest.com/products/foodscan-junior-test/

Until next time….

love and hugs xxxx

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We need more tests… The York Test! (Blog#10)

So, after our first experience with Kinesiology and being told that Ellie was having issues with her gut and that she was intolerant to wheat, dairy, cows milk, oats and potato we went hell for leather and took all of those things out of her diet.

We’d already asked at the doctor’s whether intollerance testing was available on the NHS – but it was restricted to allergies.  The difference between them is; an allergy will show up almost immediately (such as a rash or vomitting) but an intolerance can happen several days later, which makes it doubly hard to work out what nasty food caused it.

I can’t remember how we came across The York Test – whether it was Dr Hillary on Good Morning TV or if it was word of mouth, but we found ourselves Googling it and forking out the £200+ on this comprehensive intolerance test which looked at 113 foods from a small sample of blood.

So, we ordered the kit, pricked Ellie’s finger and sent the sample back.  The results took a few days to come back… and there it was – Wheat, Gluten (Gliadin) and Cow’s milk, with a borderline result on Beef and Yeast.

So, we continued with the diet and very slowly, we saw improvements from what we experienced in those dark winter months.  There was still such a long way to go.

I’m not going to lie, it was hard work.  Constantly planning ahead and taking a rucksack of food everywhere we went.  Watching Ellie’s every move – she was two, she didn’t yet understand that she couldn’t have the biscuits at play group and why did mummy have a special one.

The ‘Free From’ aisles were a lot smaller than they are today, and didn’t even exist in some supermarkets. There was very little ordering on-line – we weren’t that computer savvy back then anyway!  There was also very little choice if we went out for a meal – it was usually baked potato and beans as everything else would have some kind of a coating on them.

We were so lucky to have family on our side with these big changes to Ellie’s diet.  I’ve read stories where family members don’t get on board, not believing it makes any difference and sneaking little treats because ‘one won’t hurt’.  There were several occasions where it only took one little mishap for Ellie to be really poorly a few days later.

I know that back then I would never have done it without my mum’s help.  She was amazing.  She would be constantly researching, trying out recipes for biscuits and bread made of  different flours and scouring the supermarket aisles for foods that Ellie can eat. She would be so excited ringing me up to tell me that she’d found something tasty that Ellie could have.  I miss that so much.

Oddly, I seem to find myself in a similar situation right now.  Ellie’s behaviour has gotten pretty erratic lately – and whilst we’d been putting it down to hormones, grief and moving up to secondary school for the past year, something doesn’t sit right.  Call it Mother’s Instinct.   I’m now considering doing another York Test to see to what extent these foods are not agreeing with her… because its bloody hard finding Gluten free food without Rice, Corn and Egg as a substitute for a non-stop eating Tween!

This time, I have no choice but to do it without my mum.  I’m just thankful for how far ‘clean eating’ has come.  There is so much more out there – whether it’s on Twitter, Instagram, Pinterest (I totally love Pinterest!) YouTube or Facebook.

So I’ve once again taken to the baking today… Cherry and Walnut Squares made with coconut oil, maple syrup, ground almonds, etc etc. I had to use an egg substitute and it didn’t turn out quite right… but practice makes perfect… or edible!mothersdaugter logo

Until next time….

Love & hugs xxx

 

Ok, so they were actually pretty nice… they just didn’t turn out quite like the picture from the ‘The Foodie Teen’ book!!

 

 

Free From Everything Granola Bars! (Blog #9)

So, you may have read in my last blog that a Kinesiology test revealed that Ellie’s body isn’t coping too well with a whole host of foods including corn, rice, yeast and the usual wheat! Cows milk and soya were ok but I’m dubious to go too full on with them as we know it doesn’t take long for her to become intolerant to them too.

So today I made my first batch of treats from a book we’d bought for Ellie for Christmas; The Foodie Team.

See below my attempt at Date and Almond Granola Bars along with the recipe and what they should look like!!

They actually taste pretty good. I didn’t have any vanilla powder so used Almond essence and chucked in a few more sultanas for good measure. My son took to cutting it up when I wasn’t looking!

There will be more to come about our story soon; tales about doing the ‘York Test’ and ‘Free From’ & Autism Florida!

Until then, Love & Hugs xx

How to do it… and what it should look like!
Before… After & Ready to Eat!

Kinesiology results! Oooooh shit! (Blog#8) 

So, nine years after doing this weird practice with Ellie, I had a feeling that some of the food she is eating at the moment isn’t helping her. We’re seeing some very random behaviour that just doesn’t feel right.

It’s so hard to tell though… she is 12 so is raging with hormones… she is 12 so is gaining an attitude with every waking moment, but she is also autistic and her ‘traits’ seem to be more exaggerated lately!

So, we had the Kinesiology food intolerance test done. Ellie lay on the ‘bed’ and was given one by one, a tiny tube to hold by her cheek with different food essence (or something like that) in. She then had to hold her other arm up. If she could hold it up, the food is ok… if it dropped, it wasn’t.  I know it sounds completely weird, but it has worked before so we had nothing to lose.

Now,  I was hoping that maybe one or two foods would come up so I could eliminate them and we would see some calmer behaviour. I wasn’t expecting 11 foods to come up! Wheat, Oats, Corn, Eggs, Cheese, Beef, Fish (cod), Oranges, Yeast, Chocolate & Rice!  What the F am I going to feed her?! Weirdly, Cows Milk was ok, as was Soya, both of which used to bother her greatly.

So, I need to give this my best shot, and the good thing is we tend to know within a couple of weeks if it has made a difference and we can slowly re-introduce certain foods.  I’m going to take the weekend to look at what foods we can work with and start next week… and on the bright side, crisps are still  on the menu!! Phew!!

Until next time,  love and hugs xxx