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….

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Until next time. 

Love & Hugs xxx

 

 

 

 

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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!! 

The ‘A’ Word (Blog #2)

The A Word…

I remember clearly – it was Boxing Day 2007 and Ellie, who was normally such a happy and sociable toddler was very upset by the visitors we had that day.  She looked terrible – her eyes had black circles around them, she looked pale and her nose was constantly running.  Over the following days, Ellie seemed to go even further downhill. Simple instructions such as “put your coat on” was met with moans and groans and hand flapping.  Ellie stopped looking at my Nan and my mum, became very quiet and speech was replaced with groans.

At a Christmas play date a friend suggested changing her milk as her daughter was having some problems.  Anything was worth trying so we changed the cows milk to soya milk. The change in Ellie was unremarkable.  The following morning we were greeted with “Hello Mummy, Hello Daddy” instead of the moaning we had been experiencing.  As days went by, Ellie became less moany and able to follow instructions again… but this didn’t last.

Over the following weeks, she started to revert back to her previous behaviour and some. The moaning became a lot worse, eye contact was going and Ellie didn’t seem to recognise close family members. We would also find her climbing into tiny spaces and constantly climbing on me – which I suppose you’d think was quite normal for a two year old, but for some reason, this just didn’t feel right.

This maybe a little TMI… but Ellie’s bowel movements had changed.  She produced what looked like ‘rabbit droppings’! She started dribbling excessively, started to eat weird non-edible things and would want to constantly be eating Weetabix.

We also had this really weird experience one night where Ellie was sat on my lap in her room, but she was looking behind me laughing uncontrollably – like she could see someone there.  We jokingly said “Ellie, can you see dead people?” but the whole episode really was quite spooky!

I’ll never forget the day when my mum brought up the A word.  It was a couple weeks into January and my husband Andy was working away for a few days. It was just after lunch when I got home from work and Ellie really wasn’t too good.  Mum had that look about her that she was going to tell me something… and then she came out with it… “Do you think Ellie might be Autistic?”

I couldn’t believe what I was hearing! I felt sick to the stomach. She was just having some trouble with her milk and something else wasn’t agreeing with her… where on earth had this come from! I just thought it was ridiculous.  Then mum mentioned a site about Allergy Induced Autism called Respectrum, run by Marilyn Le Breton and Rosemary Kessick – unfortunately, this site is no longer running. Part of the site included case studies about children and how certain foods had affected them.  The comparison was unbelievable. Their stories all rang true to what we were experiencing.  As we read through the case studies, it became clear that these children saw improvements when removing wheat, gluten and dairy from the diet. From the experience with milk, we knew there was definitely something in this link with food.

It was time to become Google masters and do our research…. And also tell hubby what we had found out.  That bit wasn’t going to be quite as easy.

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Until next time… Love & hugs xxx

My First blog post… Our story of Autism and Diet… in a nutshell! (Blog #1)

Welcome to what I hope will be the first of many posts, talking about the ups and downs on living with a ‘Tween’ with Aspergers. From past experiences to future hopes and dreams… it’s all here!

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Welcome to ‘Tales of a Mother’s Daughter’.

This blog is primarily about the ups and downs of living with a ‘Tween’ on the Autistic Spectrum.  My wonderful, funny, kind, challenging, anxious daughter is now 12 years old and on the brink of teenage years – god help me!.

From tales and tips, humour and hilarity (hopefully) and moans and groans, I’ll be waffling on about all sorts! From special wheat/dairy free diets and alternative therapies to hormones, teenage strops (and strategies to get you through it) and anything and everything in between!

I’ll be talking through past experiences as well and current ones – good and bad – offering advice… and asking for help!

 So, why am I here?

I’ve been saying that I was going to start a blog about our experiences for years.  I remember mentioning to my boss in an annual review at least four years ago, but never got around to starting… life just got in the way!

A lot has happened since those initial thoughts of the blog, and finally, I’ve gotten around to making a start.

The event to prompt me was the loss of my wonderful Mum.  For five years she bravely battled cancer but finally lost the fight in February 2016.

Mum was my rock, my oracle, my best friend and the person who knew me inside out.  Now that I no longer have her to turn to, I’m ready to start sharing tales about my daughter on this here blog – hence the name, ‘Tales of a Mother’s Daughter’.  Clever huh?  I hope some of the information and ideas will be useful, though I can’t promise it won’t be used for a right old moan now and again!

Our Story… in a nutshell!

What started out as a virus for our two year old daughter turned into something life changing.  Something that would challenge our strength, our belief and our fight for a diagnosis.

Our daughter Ellie was two when she was poorly in early December 2007.  A couple of days of vomiting and temperature seemed nothing out of the ordinary.  It wasn’t until over the Christmas period that things started to change.  Eye contact with us was lost, speech which was fairly advanced had reduced to moans and groans.  The ability to follow simple instructions was gone and recognition of close family reduced greatly.

After paying to see a consultant who had no clue as to what was going on and deemed Ellie’s dream world behaviour as ‘endearing’, we had no choice but to turn to Google! We took to researching and found study cases for Allergy Induced Autism that matched exactly what was happening to Ellie.  The main focus in helping children in these cases was removing Wheat, Gluten and Dairy from the diet.  Not knowing what else to do other than to watch our daughter’s symptoms worsen, we had no choice but to give this a go.

After going through a period of ‘withdrawal’ from these foods (not too dissimilar to drug addicts coming off heroin)  three weeks later we started to see an improvement in Ellie’s speech  and she started to interact with us again… but things still weren’t back to how they were before.  If at any time Ellie accidently had one of the withdrawn foods, she would suffer around three days later with excruciating tummy pains, and a worsening of symptoms in eye contact, moaning etc which would then lessen over a few days.  It was clear to see that there was something in this connection with food.

There we embarked on a two year journey, seeing consultants, re-telling our story over and over again, having multiple assessments.  We would go through the same story of how Ellie would regress and be in pain when she had wheat or dairy but the Paediatricians we saw had never heard of a connection with Autism and food.  We were made to feel like we were making it all up.

We then insisted on seeing a particular consultant who was more specialised in this field.  After several appointments with Ellie, she confirmed that Ellie was indeed on the Autistic Spectrum and we finally had a diagnosis for her.  We also saw a Dietician that confirmed that some children with Autism can improve when certain foods are removed from the diet – but there is a very small window of opportunity to do this.  Finally we felt we were getting somewhere!

Once we got a diagnosis we started to get some help.  Support groups helped us to understand what was going on and put us in touch with professionals who were more ‘in the know’.

We met with a lady called Ruth Salisbury who, once we told her our story, sat and drew a diagram of the nervous system and explained to us exactly what had happened to Ellie’s system the day she had the virus and how things hadn’t reconnected properly once the virus had been fought.  She explained how wheat and dairy are not being fully broken down in her tummy and therefore their ‘proteins’ stay in the bloodstream and effect the brain.

To have someone understand what you are talking about and give you the answers to why things are happening was the biggest relief. I think I cried the whole day, retelling family and friends that this is what had happened.  For two and a half years we told our story to at least half a dozen consultants that didn’t understand, just nodded and said “oh, I see”. Finally – somebody understood!

Things would have been very different if we had listened to those doctors and consultants in the early days that didn’t really understand what was going on with our daughter.  If we’d taken their advice, the situation would now be a very different one.  With a little belief in what we were doing and the determination to fight – we managed to reverse those dark days of minimal eye contact, minimal speech and a host of other symptoms and kept going until we got the answers we needed to hear and got the help to move us forward.

When it comes to your children, never give up on your instinct…always go with your gut. You know your children better than anyone.

 Until next time…  Love & Hugs xxmothersdaugter logo

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