Tourette Tales

Another Diagnosis, Another Label

By August 19, 2016 Co-Morbid Symptoms, Diagnosis
adhd

The blog has been very quiet these past few months, partly as we were busy buying a house and undertaking renovating projects. Another reason is I was awaiting a firm update from CAMHS. Back in January George had a routine medication review at CAMHS, during this meeting we mentioned concerns about George’s behaviour and sleep which seemed to have gotten worse. We did wonder if having had a recent growth spurt he needed to increase his medication dose. We agreed an increased dose to try and the Dr asked us if we had ever considered ADHD, how we laugh. It was agreed we would go away and get copies made of the numerous reports we’d accumulated over the years for the Dr to review, if she felt it would be wise to do another ADHD assessment the relevant forms would be sent to us and the school. A few months went by and due to a mix up with the paperwork being lost in the post nothing much happened.

Meanwhile, we also had George’s annual EHCP review, during which we discussed George’s ADHD review, it was also mentioned that there were still other issues that that aren’t really covered by the Tourettes or ADHD labels.

During the summer term there was a big change in George’s unusual behaviour, he wasn’t dealing very well with the absence of his teaching assistant whilst she was on sick leave and wasn’t coping at all with friendship difficulties. His behaviour became frightening. We spoke to the school SENCO and arranged an emergency meeting with his CAMHS Dr. By now all the ADHD paperwork had been reviewed and an observation was arranged so George could be observed in a school environment. We had written a very long list of our concerns and it was agreed this would be looked at too.

We had a month long wait between the school observation and the meeting to tell us the outcome. We were concerned as George had come out of school on the day of the observation and asked angrily why we had sent someone to spy on him and he had to be on his best behaviour as somebody was following him around making notes. The observation was supposed to be without George realising he was being watched. Despite this, when we had the meeting at CAMHS it was revealed he does have ADHD. They had also looked at our other concerns and he is currently on a long waiting list for a specialist appointment for an Autism assessment. Sadly, I don’t think this will happen in time for his high school applications which could affect where he can get a place. CAMHS also think it is highly likely the outcome will be Autistic traits but not in the right combination for a diagnosis, we can only wait and hope the years of social training and emotional therapy etc don’t scupper the results, George is good at doing what he thinks he should be doing/saying in a clinical situation even though he can’t transfer these skills to real life scenarios.

We have been told in the meantime to carry on treating him as though he does have ASD as well as ADHD and see if these adjustments improve his behaviour.

adhd

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Should We Be Labelling Children With SEN?

By January 28, 2016 Co-Morbid Symptoms, General
SEN labels

“Labelling” your child is a controversial subject with a lot of people feeling strongly about it.  We recently attended a talk on ADHD and the subject came up of why people feel the need to have a label.

We have always wanted a “label” for George, let me explain why we felt this was important.

Before George had a Tourette’s diagnosis he had no medical diagnosis to explain his difficulties and why he does the things he does. As a toddler out and about at toddler groups he would be very hard work, not conforming to standards of behaviour expected of him. We knew there was something not quite right but with no medical professional recognising this we were left to try and explain his behaviour to others. This is very hard without a name, people then tended to give him their own labels such as “naughty”, “out of control”, “wild”, “undisciplined”, “spoilt”, “rough”, “aggressive”, “spiteful”, “strange”. As a parent these things are hard to hear, to a young child growing up hearing these things must have been soul destroying. George learnt early on, he didn’t get invited to birthday parties or play dates, people declined invitations to his parties. This is simply because people don’t make allowances for the above labels, he was the child you told your child not to play with in case his behaviour rubbed off on them.

As a parent my confidence was destroyed by years of being told by medical professionals there wasn’t anything wrong with him, we just needed to work on our parenting techniques.

There aren’t many books or support groups for children with difficulties with no diagnosis, so we were alone and feeling very judged.

When we finally had a diagnosis after years of the above it was a huge relief. We could access support networks, read books about Tourette’s, explain to people about George, everything was so different.  I often wonder what George’s early years would have been like had he been diagnosed at the start?

People’s attitude changes when you have a diagnosis, instead of telling their children to avoid your “naughty” child, they explain to them George has Tourette’s and sometimes finds things difficult.

For us George being labelled as having Tourette’s meant:
Acceptance
Understanding
Support
Targeted support at school
Reduced the unhelpful negative labels people gave him.

Labels don’t have to be a negative thing, they don’t define a child.  In our case it allows George to be himself without judgement.

At the moment George has a lot of other difficulties that aren’t covered by the Tourette’s label. This has proved to be a problem when converting his statement to an Education, Health and Care plan (EHCP). We are now in the process of having his other needs re-assessed and if necessary he will have additional labels. We hope if this is the case it will free him and allow more doors to open.

 

SEN labels

Should I Label My Child?

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The Hardest Part, Dealing with Co-Morbid Symptoms of Tourette’s

By January 15, 2016 Co-Morbid Symptoms
Sweet tin

Wow, this morning really drummed everything home once again.  It is so hard finding out your child has Tourette’s, at the time the tics and the uncertain future were a huge worry.  Actually, now the tics are just part of George and really are the very least of our problems.  The thing I find the very hardest to deal with is the rages that accompany George’s Tourette’s.

From a baby George has always come across as very angry, one of the first sentences George put together was “I throw”, this became his catchphrase as a toddler, when things didn’t go his way he would throw things.  During these rages George seems to gain superhuman strength, he is totally out of control and unreachable during these times, it is so scary watching your child transform in this way.  It has always been hard to deal with but as George has grown and his strength has grown along with him the rages have become more extreme.

The rages come without warning and are long lasting.  This morning started out well, George got up and got dressed.  Today is Friday, the day they have sweets after school.  Henry was in the kitchen sorting out the sweets ready for this afternoon,. There was only one of the sweet pots in the cupboard, so Henry, thinking he was being kind said George could use this and he and Faye would use the sandwich bags.  Without warning George took the pot and smashed it into pieces, took the tin of sweets and threw them over the kitchen.  I tried to remain calm and told George that he would not now be able to have sweets after school because of his actions.  This resulted in George rampaging through the house, emptying a bag of cat litter onto the hallway floor, emptying his water bottle, throwing the contents of his wardrobe onto the bedroom floor and making it clear this was my fault, how dare I punish him.

By some miracle we managed to get to school, I spoke to his Teaching assistant and SENCO so they could take him out for a time to talk to them and calm down. I hate leaving him at school in that state and I’m so pleased he has such an understanding school that will make sure he feels secure.

It’s hard living feeling like we are walking on eggshells, never knowing what will trigger one of these rages.  George sees the world through such different eyes to us, I just wish sometimes we could share that view so we can understand where George is coming from.

 

 

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A Tourette Tales Christmas

By January 8, 2016 General
Fun at Harrod's Christmas Grotto

We have had a very busy few months in the Tourette tales household.  Christmas is a big deal in our house with preparations starting early.

This year, due to shortage of tickets our annual trip to see Father Christmas in the Harrod’s Grotto was in mid November.  This was our 10th visit to the grotto and was absolutely amazing.  George sometimes struggles with crowded places but as we had a weekday evening slot the store was fairly quiet and he coped really well.  The wait in the queue passed quickly due to the interactive games and activities along the way which we all enjoyed.  There was also an option to skip the queue if George found he couldn’t cope, the booking staff were very helpful and made us feel welcome and comfortable.

Our Christmas really began on the 29th November when we awoke to find the elves had fully decorated during the night, put up our tree and even changed the bed covers to Christmas ones.  Our elves Chilly and Chillyette had arrived with a North Pole breakfast.  It was like Christmas day.

The Christmas period means a lot of changes in school routines for George and lots of day trips and excitement in the run up.

We made the decision many years ago that the whole family had to do the things we enjoy and it wasn’t fair to George or his siblings to cut out all our traditions. Although George struggles at times, he looks forward to the things that make our family Christmas.

We have had to tweak things over the years to allow George to enjoy things and cope with them and this year was probably our most successful Christmas.

We had our elves stay with us throughout December getting up to all sorts of mischief in the night.  We managed to visit the reindeer at the garden centre, the boys went to Beaver and Cub scout camp together, carol services, crib services, walking around to see the local lights.  It was amazing to see George taking part in everything and enjoying it.

Christmas eve can be a tricky day for George, lots to do and overwhelming feelings that sometimes bubble over.  This year we made sure all the chores were done the day before so we could relax during the day.  We split up the many traditions over the day, we made our reindeer dust and sprinkled it outside in the morning we hung our stockings early and only had one difficult moment mid-afternoon and a bit of over excitement at bedtime.

One of the things that helps George during this period of change of routines is the fact that we do the same things every year so although there is a lot going on George knows exactly what to expect.  We allow plenty of time for activities like baking or craft so George can join in at his own pace and dip in and out as he feels comfortable.

Father Christmas brought George a few new fidgets that went down really well. He has expressed an interest in doing a video review so watch this space.

IMG_7984

 

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Half Term in the Tourette Tales Household

By November 10, 2015 General
Mr Ploppy, George's giant fidget toy

Holidays can always be a worry, the lack of routine, different places to visit can be difficult.  This half term we had lots planned, we caught up with friends at the local farm and George got a chance to do some pond dipping.  This was a really lovely day and he coped well despite being out all day.  We squeezed in a last trip to Chessington World of Adventures before our anual pass expires, we definitely held our breath for this one as the last visit was George’s birthday and we had to cut the day short as George wasn’t coping.  This time the weather was better and despite being very busy we managed to get on everything we wanted to and had a fantastic day.  The highlight of the day for George was his visit to the gift shop where he found a giant fidget toy.  He has named him Mr Ploppy and hasn’t left it alone, £7.50 very well spent.

We saved a trip to Legoland Windsor for the very end of the half term, there were a few times we had to take time out to settle George but we didn’t have to leave, we stayed until the fireworks which were out of this world.  George really enjoyed them especially with his special glasses that turn the fireworks into Lego bricks.

The days we were out were really good, at home was less peaceful and unfortunately we ended the fantastic week with a rage attack ending with his brother’s ipad being broken.  Back to reality with a bump.

 

 

mrploppy

 

 

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Superheroes

By October 22, 2015 General
George in his somewhat unorthodox Superhero costume

Whilst having a sort out of the children’s artwork and school work they’ve brought home, I came across this Poem.  In year 2 George’s topic was Superheroes, at the end of the topic he took part in a class assembly and read out the poem.

I thought it was very appropriate for all those fighting hidden battles and dealing with things even as a parent I can’t really understand.

“A hero is the kind of thing that you were born to be.

But you don’t need to soar or speed or swim under the sea.

You just need to be yourself

so strong and brave and true

And soon you’ll see that you can be a superhero too.”

As part of their topic they also had a dress up day, they all got to chose their favourite superhero and come to school in their costume.  Uh Oh, costumes and George do not mix, George has never got involved in dress up games even as a toddler.  Dress up days cause George a huge amount of anxiety.

On this occasion George agreed to dress up, only if he could go as Darth Vader.  Not a suitable candidate for a Superhero right?  George asked his teacher if he could be Darth Vader, she initially said no as Darth Vader is a “baddie”.  George thought about this and came up with the argument that although Darth Vader was the “baddie” at the end he was a hero as he died to save his Son.  Impressed with the argument and the reasons behind it, he was given permission to wear his costume, the only day he has willingly worn a costume.

George in his somewhat unorthodox Superhero costume

George in his somewhat unorthodox Superhero costume

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Secondary School

By October 15, 2015 General
Moving-On

In September we began our search for a secondary school even though it doesn’t seem five minutes since he started nursery school.  As George has a statement of special educational needs, we have begun to look around now, at the start of year five rather than year six.  This is so we can have our school choices and evidence ready for his year five statement review.

Not only do we have to find a school that best fits his needs, we are in the position that we live in the neighbouring borough to his current school, this somewhat complicates things as it is harder to get a place at an out of borough school.

We first took George to look around my old High school, I’ve not been back in the 16 years since I left so I was really excited to take a trip down memory lane.  The school has expanded extensively so there were many new buildings to see and explore.  As we started our guided tour it became apparent that George was really struggling, his tics were in overdrive and the signs of anxiety on his face were plain to see.

There were lots of practical demonstrations to see and games to take part in as we went round.  When we arrived at the science lab we realised there were going to be issues for George we hadn’t even considered.

We had discussed the huge increase in size from a primary school of just 300 or so to a high school with 1500 pupils, the moving to new classrooms with new teachers each lesson and the problems this could cause.  We hadn’t really thought about the new lessons George would get to partake in.  At primary school there are no practical classrooms so George has never been in a science lab, woodwork, sewing or home economics room.  George was invited to take part in a science experiment.  Whilst he was listening to the teacher speak he was absent minded and squirting various chemicals out of the pipette.  Concentration and impulse control in practical lessons could be tricky.  Then there is the smell of the lab, George is very sensitive to smell and the overpowering smell of a science lab could be unbearable to George.  A lot of George’s tics involve touching his face or chewing things, not a great idea in a science lab full of chemicals.

On the positive side, this particular school has an ASD hub.  Although George doesn’t have an ASD diagnosis and would be based in the mainstream classrooms, as a lot of his symptoms cross over into ASD territory he would be able to make use of the resources there during lunch, break times or if he needed for particular subjects.  He relaxed a lot more in this room and loved exploring the sensory toys they had out on display.

We have looked at a few more schools and they have varied enormously in the support they can offer.

We now have time to have a long think, re-visit the schools and decide which can best fit his needs. It is such a worry how he will deal with such a huge transition, just moving from one year group to another takes weeks of preparation, it’s a good job we’ve started early.

I’d be glad to hear any words of wisdom from any parents that have already tackled the transition to high school, what steps you took, what helped ease your child into the new school?

Moving-On

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Birthday Celebrations

By October 11, 2015 General
Feeding the Penguins , George's dream come true.

Sometimes we forget about George’s difficulties, his behaviour and tics are just part and parcel of everyday life for us.  Then something happens that bring it all back into focus and my heart breaks all over again when I see how hard things can be for him.

George has had a love of penguins ever since he had his first penguin comfort toy as a baby.  I don’t know how he manages to sleep at night as there are so many cuddly penguins sharing the bed with him.  For his 9th birthday we had agreed we would try and arrange for him to feed the penguins at the zoo.  Unfortunately this year the zoo had renovated the whole penguin enclosure and the penguin feeds were unavailable for most of this year.  We anxiously kept checking the website for details of when the penguin feeds would be resumed.  Finally, with only weeks to spare, the experience was once again advertised on the website.  Next step was booking it, the penguin feed is an experience you can only book on the day, this is because they don’t make a decision on whether the feed will be taking place until the penguins have been checked each day.  This was a problem for us, George likes to know what is happening and does not cope well with surprises.  The best I could do was arrange a phone call on the morning of George’s birthday to let us know if it would take place.

25th August arrived and we prepared to go to the zoo, still unsure what would be happening.  Finally, whilst on route and only ten minutes away from the zoo the phone call came confirming that we would be able to feed the penguins.  We would have to go straight to the kiosk to book it when we arrived as there was only space for two people per day.  When we arrived and it was confirmed we would be feeding the penguins today, George didn’t know what to with himself.  He was trying not to cry and his tics went into overdrive, he was flapping and making noises uncontrollably.

Thankfully, we only had an hour to wait for the feed and it was the most magical experience for George, I did it with him and to be in the enclosure surrounded by the penguins at your feet whilst hand feeding them was a memory we will always cherish.  We have some lovely videos and photographs to keep.

After the feed we took George to the shop and bought him an adopt a penguin kit, after carefully explaining he wouldn’t get to take one home with him.

Once the feed was over we headed over to the rides, this is where things went badly wrong,  George went into complete meltdown, tore his wristband off and started being very aggressive towards us.  We had to make the decision to leave the park as he was unable to calm down and he just wanted to leave.  It is such a shame that he can’t always enjoy the things he loves the most, he cannot process his emotions or articulate them effectively so any strong feelings either happy, excited or sad, worried or upset come out as a rage or meltdown.

Thankfully, after a while calming down at home he was able to have a birthday tea with close family.

Feeding the Penguins , George's dream come true.

Feeding the Penguins , George’s dream come true.

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Medicate or Not?

By October 7, 2015 Back Story, Medication
A big Decision

One we’d had time to process the diagnosis,  we had to make the decision on whether or not to medicate to help control the tics.  We spent a while discussing the options.  We included George in this decision and we all decided to try Clonidine.  To see George in pain and crying with his mouth tics, being sent home from school because his face had bled all over his shirt and muscle soreness from repeatedly clenching muscles was the main reason we went ahead.  George had always had trouble sleeping and this was having a knock on effect with his behaviour and school.  It was hoped the Clonidine would ease this problem too.  We chose Clonidine over any other medication as it is the medication with the fewest side effects.  Another benefit of this medication is it can be used to treat ADHD, so although they were unwilling to re-assess for this, this treatment could help with the ADHD symptoms.

We started off on a very small dose of Clonidine and very slowly along with regular blood pressure checks increased the dose until it had an effect.  The effect on George’s sleep was incredible, from staying awake hours and hours after bedtime, waking in the night and getting up at the crack of dawn he was going to sleep at a reasonable bed time, allowing the rest of the household to get a good night’s sleep.

Clonidine isn’t a magic cure, we explained to George it won’t take the tics away completely but would help.  George still gets new tics regularly along with some old faithfuls, there are times they are barely noticeable and other times they seem to be as bad as ever.  This is something George sometimes struggles with.  We’ve had tears when tics have become bad again because “you told me this medicine will help me”.  One of the toughest times we had was when after a few months of taking his tablets, George asked “How long will I have Tourettes for?”  We had to explain that it’s not something that will just go away like a cough or cold,  when he realised this was a long term deal he was beside himself.

Medication is a very personal decision and not one we took lightly, there isn’t a right or wrong answer, like everyone else we made the decision we felt was best for George.  I know many people like to wait until the child is older or try alternatives such as supplements before tying medication, you just have to do your research and make a decision you feel is right for your family.  Don’t let anybody make you feel guilty what ever option you decide.

Tourettes Action have some good information for people deciding on the path that is best for them with regards to medication.  Click here for further information.

A big Decision

A big Decision

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Twits

By October 1, 2015 Back Story, Diagnosis

Following the diagnosis we explained things to George and to our surprise he took the news really well.  He was confused the first few days and told everybody he had “twits”.  He was so pleased to be able to tell people “I can’t help it”, I also found the way people reacted to George changed dramatically once I was able to explain to them why he does what he does.

We read the leaflet we were given “What Makes us Tic?”, and researched the condition online.  Everything we read described George perfectly, sensory issues around clothes, need for sensory stimulation, sudden extreme rages, OCD type symptoms and sleep issues.  I cannot believe nobody made the connection.

We asked at our next appointment, if ,  given the fact a very high number of children with tourettes (figures quoted range between the 80% and 96%) have ADHD George could be re-assessed, we could not believe that with the symptoms he displayed he was in the minority.  We were told no, the original report was very clear and they could not question another colleague’s diagnosis.

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