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

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Friday Morning Rant! The joy of non-uniform day and music festivals! (Blog#7)

It’s not often I will do this (I hope) but I’ve had a crappy morning and my first instinct was to bash out a blog.  The whole point of me doing this – along with telling our story, was to get off my chest all things I would want to talk to my mum about (double meaning to the blog you see) so hopefully after this I will feel better… otherwise I may need a trip to the local bakery as it’s a little early for wine (unless you’re in an airport!).

So the morning started in a familiar way – sleepy hubby, crazy dog, chirpy son, mildly grumpy daughter… but today is a different day – which is usually not a good thing.  It’s non-school uniform day and Glastongrove Music Festival (taking place at school for the last lesson of the day going into the evening – family can attend after school).

So first we have the drama of whether Ellie looks nice in her chosen outfit.  She’d made a really good choice and she looked lovely.  I could handle the constant asking if it was done in a nice tone of voice, but Ellie’s default setting is sarcastic/angry/loud and hyper negative so her repeatingly barking at us “do I look nice?” wears a bit thin at 7.30am!

I maybe made the mistake of suggesting that it would sound a lot nicer if she said ‘how do I look’ (said in a much gentler tone!) to which she attempted to repeat it, one angry version, one sarcastic version and one upset version.  After moving on quickly from that, I dared to check if she’d done her deodorant and perfume (as she’d worn perfume the previous day). Well, that sparked a lot of angry shouting saying I was ‘forcing her to wear perfume’.  WTF!!!!  So I told her I didn’t care either way to which she screamed “I WILL!”. Trying to keep calm, I walked away.

So the next little speed bump this morning was the the whole music festival thing.  Ellie wants us all to go, but at the same time, doesn’t want us to go and she simply can’t cope with that emotion.  She told me “I’m gonna be kinda embarrassed when you and Dad turn up later” so I said (still calm) “That’s fine, I’m happy not to come” to which she yelled – “BUT I WANT YOU TO COME”.  That too-ed and fro-ed for a bit… all going on whilst trying to get out the door for school! I dare not ask if she’s done her teeth yet, but I do! Not my best decision!

What followed was a lot of stamping, kicking things (because she is, quote; ‘so angry’), muttering, saying negative things about herself  and all the while I just want to scream my head off… and I nearly got there a couple of times… the volume in the house was definitely rising this morning!   Thankfully, our little eight-year old was being a little angel… they do that on purpose to piss the other sibling off, but I’m not complaining!  I felt awful that I couldn’t wait to drop her off at school.

Now, I get that ‘Tweens’ & ‘Teens’ can be miserable, hormonal sods that make you want to chop your own head off… but what I struggle with is the whole negative, anxiety part that autism throws in with it.  Blowing up over the smallest thing.  Every bit of my response is super analysed and seen as negative, however I say it and whatever I say.

I mentioned in my last blog about how we used Kinesiology when Ellie was small to find out if any foods were bothering her and that she’d done a few things lately that didn’t sit right with me.  Well, I have an appointment with Ellie later this afternoon to see the same lady.  I haven’t told her yet though… it’s just easier to tell her 5 minutes before we leave!

Is it wrong that part of me wants her to find something?  We know that if there is too much of something in Ellie’s body it can effect her brain function. It’s not going to take the Autism away but it might help with the occasional weird eye flicking, the stuttering and not being able to get words out.  The only thing is, if she has to cut out crisps, we’ll be in for another meltdown!

Best check the wine fridge!

Until next time…

mothersdaugter logo  Love & Hugs xx

 

 

 

 

 

Kinesiology… Kinesi-what?!! (blog #6)

So, we had already seen a bit of an improvement in Ellie’s symptoms from changing her diet, but we needed to know exactly what was bothering her.   I personally had suffered with episodes of tummy pain in the past (we’re talking 2001 here) and it got sorted out with a practice called Kinesiology.

Kinesi-what?!  It’s one of those ‘alternative therapies’ that you need to have an open mind about. We weren’t even sure if it could be done with two year old… but, it turns out you can!

We visited a practitioner who lived not too far away who saw myself, my Mum and Ellie. Now, this next bit may sound a little mumbo-jumbo to some of you, and to be honest, we weren’t really sure of it ourselves, but we gave it a go.

This is what happened….

Ellie (two years old) sat on my mum’s lap whilst I lay on the bed.  The practitioner did something with my ‘Meridians’ and cleared them and I then held Ellie’s hand so she was now working with Ellie’s body.  I know, I know, this all sounds very weird!

I then had little samples of different products placed on my chest and I had to push with my arm against the practitioners arm.  I didn’t know what she was putting on and when, but there were occasions when I couldn’t lift my arm at all!  Can you guess what I (Ellie) was weak against?  Wheat, Dairy and slightly against a few other things like potato, beef and even tomatoes. OMG… ketchup!!

This certainly helped us to pinpoint what was troubling our little girl and encouraged us to stick with the diet.  We tried a few more forms of testing such as The York Test which also confirmed similar foods.

Its been nine years since we did that test but today, I looked up the details of the same Kinesiologist.

I’ve had this niggling feeling lately that something isn’t right…. some weird eye movements, stuttering, not following simple instructions… it might be nothing… but my gut is telling me to follow this up.

Until next time…

mothersdaugter logolove & hugs xxx

‘Sequence of Events’  Hurrah for paperwork and filing cabinets! (Blog #5)

I’ve been trying hard to remember the order in which everything happened during that first year of Ellie’s illness. So much went on that it’s all a bit of a blur to be honest.  Well, imagine the joy when I looked through the filing cabinet to find two files (‘Ellie Medical’ & ‘Ellie Food’) crammed full of paperwork including a typed up food diary and ‘Sequence of Events’ for the first year! Yay! 

I’d genuinely forgotten all of the symptoms and pain Ellie had gone through and I’m so pleased that I documented it all.  I’d done this so I could confidently talk through what was happening with any consultants we saw. You know what it’s like – you’re face to face with the Doc and everything goes out of your head… until you’re on your way home! 

So, here I attach a photo of the first ‘Sequence of Events’ and the food diary. I hope you can read it!    

Until next time… love & hugs ❤

The tale of the poisonous cat biscuits! (Blog #4)

So, we are in full swing of the diet and Ellie is making slight improvements in terms of eye contact and speech, though a lot of other symptoms such as climbing, flapping, moaning still remained. I was also reading a book by Actress Jenny McCarthy (married to Donny Wahlberg of NKOTB fame) about her autistic son and what happened when she cut wheat, gluten and dairy from his diet.  It was an almost carbon copy of our experience with Ellie.  I remember reading it in tears. It’s a great book, called ‘Louder Than Words’ if you’re wondering.

Despite our best efforts, we found out pretty quickly what would happen if Ellie had an infringement on the diet.  

Ellie and I were at a friend’s house on a ‘play-date’ and whilst chatting over coffee, I looked around to find Ellie eating biscuits from the cat bowl!  Was she really craving wheat that badly that she need to get a ‘fix’?

What happened next was quite unbelievable.

It happened around four days after the cat biscuit incident.  I remember it was a Sunday evening and  we put Ellie to bed at 7.00pm with no drama.  At 8.00pm she woke up crying and moaning and throwing her arms around all over the place – literally thrashing around.  Hubby and I then spent the next two hours holding her tightly so she couldn’t hurt herself and trying to comfort her. We took a video of her which I showed my GP at a later date. I wish I still had that video – it was on some old phone and not great quality but  if I ever find it on some hard drive somewhere  it I’ll upload it!  

Over the next three days, Ellie would get these episodes on and off throughout the day and each time the pain would be shorter. They became less frequent and by the fourth day it had completely stopped.

The same thing happened every time Ellie had something she shouldn’t have – usually grabbing something at a birthday party or play date when I wasn’t looking! Mum and I would watch her like a hawk at playgroup when the biscuits went round and we’d have to constantly explain to parents why she couldn’t eat them which would be met with disbelief, shock and “will she grow out of it?”  At this point, we had no idea.

I remember once running frantically through a party as she was about to pop a Cheesy Wotsit in her mouth (other cheese puff brands are available).  The parents must’ve thought I was a complete lunatic!  I remember someone making a clever comment trying to be funny, obviously not understanding what was happening and probably thinking it was all bullshit… much like the consultants we saw!  

But that’s for another blog….

mothersdaugter logo

Until next time. 

Love & Hugs xxx

 

 

 

 

Our child… the two year old drug addict! (Blog #3)

So, back to the story.  Its January 2007 and what we know so far is that from a two day vomiting virus, Ellie started to lose all forms of communication… which then improved when we switched her milk… but then got worse again a couple of weeks later.

I hadn’t meant to tell hubby while he was away for work that Mum had asked if Ellie might have autism… but I’d been so worried, it just came out!  Of course, this suggestion was ‘absurd and ridiculous’ … I couldn’t believe I was saying it myself!  I’d got home from work and Ellie was in a confused state and making this awful moaning noise and shaking her hands frantically.  I remember ringing the doctor in a panic and getting an appointment that afternoon (those were the days!).  An hour later Ellie had calmed down and I called them back and booked an appointment for the following week.  At least now we had some time to research.

The case studies on the Respectrum website explained how children had stopped recognising members of their family, found simple instructions difficult, speech reduced and reduced eye contact.   The only time we heard Ellie talking was when she was reading her Fifi & The Flowertots book where you could hear her chat about Fifi and Bumble – so we knew the words were still in there.

By this time, hubby was also seeing that we had a point – that Ellie really wasn’t right and these case studies really did mirror what we were experiencing.

After reading more about how the diet helped these children, like a bull in a china shop, we decided to take out wheat, dairy and gluten from Ellie’s diet.  Now, this was 10 years ago and to say there wasn’t much around in terms of ‘free from’ food (in the UK) is an understatement!  You could buy loaves of disgusting bread and packs of pasta, but noting like the assortment of goodies you can get today.

My mum was an absolute diamond, she was constantly looking up recipes and searching for things in the supermarket that Ellie could eat.  She’d call me, so excited to have found something new we could cook up! I really don’t think we could’ve implemented the diet without her.  It all did feel like a lot of hard work, but with mum doing the ground work on the food side, we felt able to give it a go.

We bought the book written by the lady that ran the Respectrum site – ‘Diet Intervention and Autism – Practical Guide for Parents’ by Marilyn Le Breton.  She spoke about how her son Jack had changed dramatically after a few weeks on the diet and how the protein gluten and the milk protein casein, breaks down into peptides which act similarly to morphine – a highly addictive drug.  Marilyn went onto say that our autistic children were basically drug addicts!  She explained that our children crave the foods they can’t tolerate – like a drug.  It then dawned on me… Ellie was constantly eating Weetabix and eating cheese like it was an apple!

WTF!! Was this really happening to Ellie?

Marilyn also explained how she pulled all the ‘bad foods’ straight from Jack’s diet and that actually you should do them one at a time.  Aaaah, ‘”too late” was the cry – we’d already started!  (Marilyn, if you ever read this… please know that your book was invaluable to us – thank you x).

That next week or so was a bit of a blur if I’m honest.  Mum and I had gone to the doctor with our ‘findings’ who replied “you seem to know more than me” but did agree to refer us to a Paediatrician on the NHS and also write to a consultant in Exeter so we could see someone straight away privately.  We were so desperate for help.

Ellie continued to get upset and moan a lot, she was climbing like a crazy person, she was constipated, hot and sweaty had a constant runny nose and dribbling.

The day we took her to the private consultant she stared out the window of the car for the entire hour journey – it was almost spooky.   During our appointment she did look at the toys while we chatted and the consultant seemed interested in what we had to say but admitted he wasn’t specialised in this subject and found Ellie’s behaviour ‘endearing’. Seriously!!! Our child had completely changed in the space of a month following a simple virus and you describe her dreamlike state as ‘endearing’.  That was my lasting memory of that appointment.  He did however, agree to do allergy testing (as he’d never heard of intolerance to food), which subsequently were all negative and cost us £200 – something he’d failed to mention!

So we continued on the diet, writing down everything that passed her lips, buying obscene amounts of corn pasta, rice and soya milk and any other treats we could find.   We kept a ‘Food & Mood’ diary so we could keep tabs on any progress and keep pre-school up to date with what was happening.

After a week or so, Ellie’s moaning seemed to calm down and we were in the swing of the new diet. The next thing I remember was about three weeks later when, after having no direct speech for a good two months, Ellie came up to me with her pre-school bag, took out her jeans, held them up and said “Mummy, Jeans”.

I think I held my breath for what felt like forever… and then got straight on the phone to Mum.  The only speech we’d heard since before Christmas was chatting into her books, but today, Ellie had come and showed me something.  I wanted to cry, laugh, scream with joy!

Was this diet really working?

Until next time…

mothersdaugter logoLove and hugs xx

Morning routine! Arrrggghh! (Present day ramblings!)

Back in the present day now and I’ve been wondering …Will we ever nail the morning routine? Whatever we do, it always ends in stress and anguish… and that’s just me!! 

We’ve tried all sorts in the past – countdown traffic light timers, ticklists, social stories etc etc and I’m sure I’ll come back to those in later blogs. 

This week we have changed around the order of breakfast and getting ready – we’ve been doing breakfast first and then ready for school. This seems to be going a little better because it means Ellie is downstairs eating (her favourite thing to do in life!) whilst I and hubby are upstairs getting ready. 

Now at age 12, Ellie can remember what uniform to put on and asks for help with bits that are fiddly – it’s those things you can’t see, like hygiene that I have to keep nagging about – and whenever I remind her it’s nearly always met with a stressful SORRY! with hands a’flappin and feet a’stompin! It drives me bloody mental! 

So today I bought something new… a small light up board with just two things on which Ellie turns off when she’s done them 💡

I’ll let you know how it goes!!