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.