New chapter, new blog.

So, again, it's been just short of forever since my last entry. And I have decided to create a new, secondary blog of sorts to document our new travels.
Jordyn is no longer on Endep, and no longer motor ticking. She has all but lost her vocal tics and is on her way to no more.

We are now on a mission to make her a better behaved and happier little girl. Without the tics, Jord isn't the most well behaved or managed little critter, although most of it is probably just being an 8yo. It is possible there is a little bit more there.
We always said, when she tics, she is an angel, but when she didn't, she could be a bit of a monster. Almost like suppressing them made things crazy.

Back from the depths...

Ok, so it looks like it has been over 12 months since I have been on here, and it feels like forever ago that we went through the roller-coaster of emotions that started this adventure.

I guess first an update for Jordyn.
I see her have a tic maybe once every 5-6 months, and even then, its probably just a cold shiver. Ha ha.
She has some VERY minor, and I mean minor vocal tics, if you could call them that. She clears her throat still straight after a little sniff. But that is fine by me. At least she is avoiding whiplash!
Jordy is currently on Endep25 at night. Which knocks her out cold within 90 minutes these days, and I assume this is part of the reason for the tics subsiding.


Secondly an update on me.

I met an amaaaazing woman, we now live together, not all that far from mum and dads, and we are trying to do this parenting thing together. Its hard, because she never saw Jordyn at her worst. When our hearts dropped, and stomachs sank as we watch her lose control of her little body.
I took a job in insurance to earn some decent money, and hopefully start building a life together, worked some stupid hours, and threw our whole lives into turmoil.
So I had to make a sacrifice for us, and give that up and step back into my previous job to create a level of harmony in the home, with me coming home the same time every day so that we could have some routine... this now = broke$!
As a result of the change in work hours originally, it meant Renae was picking Jordyn up for school and I was saying goodnight to 2 sleeping beauties.

Jordy didnt take to well to having this new person asking her to do things to help out, telling her when bath time, dinner time and bedtime were, and since then, it has been an uphill battle.

Before we moved in to the new place, Renae had to give away her cat, because Jordyn was just, for lack of a better word, nasty to him.
And that is where the next chapter begins...
(Stay tuned)



Mummy, Nae, and Jordyn...

Back from the darkness

It has been a while since I last posted anything. So this is just a quick check in... Jordyns motor tics are very scarce at the moment, her last bad episode was Christmas night, I think all the excitement of pressies food family and more pressies was just a little over whelming. It wore her out, and she fell asleep pretty early. Now the most she has is maybe 10-20 in a day and that will be over maybe an hour or 2 after a long day... however she has some very repetitive vocal tics that she isn't dealing very well with. She is getting to that age where she understands, so there is now a combination of sniff and then a throat clearing sound, that she repeats in that order up to 30 times in a row. I watched her sneakily as she read her library book the other night, and the poor little bugger struggled to turn the pages without having to stop, sniff, clear her throat, and then move on.
We are off to see Dr Harvey tomorrow, he has asked for a follow up, half way through her first term in Prep.
Surprisingly, beginning school doesn't seem to have worried her, her teacher has only noticed the vocals, and says she has seen maybe 2 head tics since she started at the end of January.
I have made a decision to ask Dr Harvey about taking Jordy off the Endep. It was supposed to help her sleep through the night, which it hasn't. So I dont want her taking medication that isnt doing what it is prescribed for...I find the best sleep she has is when she is in a double bed. So that tells me, that its the wiggling that wakes her, and I think she is falling out of bed. We'll fix that! My mum has ordered her a Queen sized mattress, that we should have by Friday! Ha ha... So this is something that I will talk with him about tomorrow.

Noises in the dark

Its been playing on my mind for the last few weeks, that although they are not very noticeable, I have my own tics. I squint and roll my eyes, especially when I am tired or over stimulated. I went to a festival on the weekend, and with all the noise, people and light going on, my eyes went spastic!
I sniff, everyday, to me, I feel like I need to, but when I think about it, I probably don't really. I crack my neck, a few times a day, and if I start, i have to do until I feel stretched. Soooo... this is from me? Mine just don't stand out so much, because they aren't as obvious. Why didn't I think f this? Its probably worth mentioning to the Dr I guess...

It seems like the new medication is doing what it was prescribed for, a tiny little pill at 6pm, and by 8pm, those little eyeballs are ready for sleeping... On the the other hand however, Jord has been probably the most moody, and unreasonable that she has ever been. Small and simple things are now big and stressful things.
I have been keeping small notes from the day we started the new medication so that we can fill the paediatrician in, but its hard to know if she has something wrong, or if maybe we are just reading into things, and noticing minor things just because.
The last week, I think there has been what might be the beginning of a small vocal tic. She does what sounds like a throat clear, crossed with a whimper, its hard to describe, but as the day goes on and she becomes tired, it happens as often as the initial motor tics with her neck. Does this mean, that along the road, we will definitely be dealing with Tourettes? Its scary to think that if it can progress and appear this quickly, in just 6 months, what will my poor little girl be dealing with in the next few years!?
Dr Wallace, the Neuro said that if there were any significant changes, to contact either him or Dr Harvey, the Paed. So do I worry, and contact them now, or do I wait and see how far it develops? I guess for now, just watch it for the next week and make a decision from there.

Silence is golden...

The neurologist did say that at times you wont be sure what is going on with her tics... It will be very up and down, at times, you will almost forget that she has them, because they will be few and far between, other days they will be so constant you wont know what to do with yourself.
For the last few days, its been on the low side. From what used to be almost 50 tics in an hour, I saw just 5 until 11am! It gives you false hope I think. A little rude of the condition if you ask me! :)
I am definately not making a connection to the medication she is on, because I noticed this before we even got the prescription, I just thought that it was worth mentioning.
Jordy had her 2nd dose of Endep tonight, and things seem to have gone alot smoother than last night, I guess introducing a foreign medicine into such a little body is going to do that. It made me feel horrible watching her being so out of control of her emotions, not to mention what I can only assume, was sleepwalking.
She had her dose around 6:15 tonight. Didn't want to eat anything other than a hash brown and a chocolate milk for dinner... I guess she got her veggies and calcium!! Luckily her lunch at preschool I try and keep filling and healthy. Usually last nights dinner plus fruit in Bento style packs.
After insisting that she wanted to 'fall asleep' on the couch, I figured it would be best to keep her calm for the night, and let her.
She was asleep by 8pm, I popped her in her own bed a little later, and haven't heard a peep from her.
It will be interesting to see if she comes in my room on her usual routine around midnight?
I have my little notebook here, so everything that happens, i scribble it down. So off we go again, see how the night pans out...

The ups and downs...

Jordyn and I headed to the paediatrician today, for a follow up appointment, after seeing the neurologist last week.
I had a list of things that I spoke to him about, namely, her mood swings. She has always been a strong willed little girl, but from when the tics began, her moods were shocking. She goes from a really high high, and then a low low. Her sleep patterns are all over the shop, and she at times, has no desire whatsoever to leave the house, even with the temptation of seeing a friend, going for a swim, or going shopping.
According to Dr Wallace the neurologist last week, this isn't unusual, it has something to do with 'dopamine' levels? And it can play havoc with her emotions.
So long story short, Dr Harvey our paed' decided to write her a prescription for Endep 10, a medication in larger doses is used as an anti depressant, but in this low dose, is supposed to help her get into a better sleep cycle, which hopefully will start a chain reaction, and calm her tics and moods.

So it is now 3 hours since she took her first night, and I didn't expect much, my ex takes AD meds and it doesn't usually kick in until after a week or 2. But according to the insert in the pill box if its take for sleep disorders, it works much faster. So 1 hour faster?!?!
She took the 10mg dose at 6pm, by 7pm she was not herself, she was tired, and cried for up to 10 minutes. After a bit of coaxing, and convincing Pa to relax, that he needed to give his granddaughter some space, not get cranky at her for not eating, she snuck to the table, and pushed around some meat, and then cried because she found onion in it (normally she would just pick it out and keep eating) it was all really weird.
Finally she zonked out after some book time with Grandma at 8pm.
So I guess we can safely say, it takes an hour to kick in, so feed and bath them asap after they have had the dose.

The biggest thing came after she has been asleep for an hour. She walked out into the hallway, where it was dark, but she could see my room light, and called out repeatedly "I need you, I need you" then walked into my room, and stood beside the bed doing what looked like running on the spot. I tried to pick he up, but before I could, she walked out to the lounge area, then went to the toilet with the light off, and then walked back out, and curled up on the couch, and asked me to lay down and cuddle her.
This all happened in a matter of 5 minutes or less, and then, as quickly as she woke, she went straight back to sleep, and hasn't moved again!
Straaaange.
I am keeping a note book, so everything that I see, I note. I guess we will now wait and see for tomorrow. As much as it scares me to keep trying this, I think the not trying it scares me more.

Finding the path...

I have managed to keep it together most of the time. If I crack, I do it in my own time, when Jord is asleep... the last thing I want is for my gorgeous girl to think that anything is her fault, especially mummy crying. But at the moment, I am not sleeping, and my mind runs at a million miles an hour at night, thinking of what I need to do for her, to make life as normal and happy as possible.
I know, there could be a lot worse things happen to her, to us. But Jordyn is an amazingly smart, switched on kid. You just have to watch her play, watch her with kids her age. Half the kids in her class still dribble when they eat, and sound more like my 2y.o niece to speak to! I would hate for this to hold her back in any way. I refuse to let it happen.
There is something in me, that just knows, that we are going to have to start dealing with this, because it isn't going anywhere. Its not negative thinking. Its just mummy's instincts.
Jordyn and I had a chat this afternoon, and we have come up with an answer for friends and family who question her tics. I said to her, if someone asks you what you are doing, or if something is wrong, just tell them that it is something you do, because your brain makes you do it. I explained to her, that it was like her little friend at school with Cerebral Palsy, he wears a nappy, because his brain forgets to tell him to go to the toilet. It might not be the best way, but she understood it better, because she sees him everyday.


We have ordered a few books, ones that seem a little more reliable than just searching information online, there is far too much contradicting information out there, I think a published book, by real doctors and real sufferers are going to make more sense than someone replying to a post on Yahoo! answers!

So far, arriving in the mail we have had:

"Why do you do that? - A book about Tourette's Syndrome for Children and Young People"
(Has some great and helpful information on Complex Motor Tics)

-and

"Kids in the Syndrome Mix of ADHD, LD, Aspergers, Tourette's, Bipolaor and more!"
(A good guide to share with family and teachers, and has notes, linking to relevant information within other syndromes. ADHD seems to have a lot of links to tics and TS

and I have also ordered from Booktopia:

Natural Treatments for Tics and Tourette's : A Patient and Family Guide
(this one I cant wait to arrive! apparently going to take up to 10 days though, grr)


I have found that to find the information and help for these Complex Motor Tics, you need to look more for information on Tourette's and read the information obviously focusing on the motor tic side of things.
I am looking forward to reading and learning more about this, I just have to go to sleep first, so that I have some energy to move my eyes from side to side across the words...

In the beginning...

It's hard to watch your child go from a once very happy, cheeky bubbly child... to agitated twitching, ticking, over tired and just someone you don't even recognise.
Before Jordyn turned 5, she had what we regarded to be a 'flick' where she would flick her head to the side, as though she was getting her hair out of her face.

Then 3 weeks after she turned 5, and a few comments from concerned family and friends... we noticed that things just weren't right.
Her flicks had turned into violent tics, backwards, almost like that when in a car accident and getting whiplash.

We took a few videos, and forwarded them to people we knew that were nurses/retired doctors and the response from all, was get her to a hospital, it looks neurological.
So I did just that, I took her to the emergency dept. at Brisbane Royal Children's Hospital.
We spent 7 hours there, saw the boss of the boss of the resident (that's how she explained it) and at the end of it, they had done no tests, they could not find 30 seconds to watch her and view the movements, and sent us home with "looks like a simple tic, just ignore it, and it will go away."
Thank god I took a video on my camera, and 'made' them watch it... otherwise they wouldn't have even give me that!

I decided I needed to get an opinion of someone who had the time to see Jordyn, and only Jordyn ( I do understand the E.R is a busy place) so after seeing a GP, I was referred to a Paediatrician, the amazing Dr Philip Harvey, who originally thought they tic was a kind of myoclonic seizure, related to epilepsy. An EEG soon ruled this out...
A CT was then done, and again, clear.

Jordy in this time, then developed a second tic, involving her right shoulder pulling up towards her ear.

Dr Harvey referred us on to a Paediatric Neurologist, Dr Geoff Wallace. Again, an incredible man. An amazing love for children, and all of his focus was on her.
He reviewed the results of the CT, the EEG and also viewed her during an hour long consultation, yesterday gave us the diagnosis of "Complex Motor Tics"

Next week we meet with the paediatrician to discuss controlling, maybe medicating and understanding the condition further.

So now begins the next big part of our journey... what fork in the road do we take, what way will her tics go, and how are we going to deal with it?
She is a smart little girl, and understands what is going on, so hopefully, we can work together with friends family and school to make sure everyone understands how to deal and cope with this.