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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Digesting the YorkTest!

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Photo by Ella Olsson on Pexels.com

So yesterday, we got the results back of the YorkTest (re-test) we did for Ellie last week.   We first did this for Ellie some 9-10 years ago when she was two years old and was seriously regressing and we had major concerns about Autism.

Back then the test confirmed what we thought – wheat and dairy were having a huge effect on her brain function and her ability to communicate and understand (see first few blogs for more).

Anyway, the results came back as Yeast showing as intolerance and nothing else. NOTHING ELSE!  Now, I wouldn’t expect wheat or dairy to show up as Ellie doesn’t have this in her diet (maybe just now and again in an emergency like there only being a burger van to get food from!) but other than that, very little so its likely that these wouldn’t be in her system to test against.  A huge relief though to find that the 11 foods that were picked up a few weeks ago didn’t show up.  To be honest, I did wonder if Ellie was following the instructions the Kinesiologist gave her and whether sometimes she couldn’t be bothered to keep her arms raised.  I mean, this is the girl that finds a bag of cotton wool balls heavy! 🙂

So, come Monday morning, we will be eliminating Yeast as best we can from her diet – along with still keeping her wheat and dairy free (after what we went through all those years ago, I’m terrified to fully re-introduce those at the moment – plus it would mess with any improvements from the Yeast withdrawal).

So, what are the symptoms of Yeast intolerance? If you Google this you are immediately taken to symptoms of Candida.  These include Abdominal bloating, constipation and diarrhoea. anxiety and depression, hives and psoriasis, impotence and infertility, menstrual problems, respiratory and ear problems, unexpected weight gain, feeling “bad all over”.

There is a useful video with the lovely Dr Hilary Jones on the YorkTest site that explains the symptoms of yeast intolerance and foods to avoid.

http://www.yorktest.com/food-intolerance-advice/problem-foods/yeast-intolerance/

Symptoms mentioned on the site are:

  • Bloating, Cramping, Diarrhoea, Constipation, Headaches and can also cause;
  • Acne, Eczema, Fatigue and Sugar Cravings

The symptoms that ring true with Ellie are the Anxiety and Depression (but could this be part of her Autism profile?) and also Eczema and Sugar Cravings.  I’ve always said she is addicted to sugar!

Having looked at some of the foods Ellie enjoys – crisps being the first that springs to mind, the varieties she can have all have yeast extract in apart from the Ready Salted.   Ellie is constantly asking for crisps and gets very upset when I say she can’t have any more.  She’s even been caught sneaking crisps up to her room (crafty kid).

Its also in all types of food such as vinegar – does this mean no tomato ketchup and salad cream?  No wonder she likes it so much!

Other big culprits are Marmite (safe there!) dried fruit, Bread, Mushrooms, Gravy and Stock cubes, Fermented drinks, Beers, Wines and Ciders (safe there too!) and Ginger Beer (does anyone actually drink Ginger Beer?!).

It looks like I’m going back to checking everything again and seriously reducing/stopping the consumption of Prawn Cocktail crisps, Tomato Ketchup and Salad Cream, amongst a long list of other stuff!

I’m not going to be very popular around here! :/

I’ll keep you posted… but be warned, there may be many more vlogs involving distressing scenes and wine!!

Until next time,

Love and hugs

 

TOMD xxx

YorkTest results day!

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I’ve gone all professional and added a video!  No clue if I’m doing it correctly… and as I type this blog the video shows me upside down!!

I hope when you watch this I’m turned the right way up! If not, I’m going to look a bit silly, but you can have a laugh at my expense… I have broad shoulders (I blame my Dad for that!).

I’ll be blogging more about the York Test results and my plan of attack very soon.

Until then,

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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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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

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 (no pun intended) is telling me to follow this up.

Until next time…

mothersdaugter logolove & hugs xxx

The tale of the poisonous cat biscuits!

We are in full swing of the Wheat/Gluten and Dairy Free 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 needs to get a ‘fix’?

What happened next was quite unbelievable. Continue reading “The tale of the poisonous cat biscuits!”

The ‘A’ Word. Are we really talking Autism here?

img_4064The 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 may be 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.

 

Until next time… Love & hugs xxx

The start of our Autism Journey…

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!

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

What is this all about?

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… the short version!

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 xx

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