An interesting few days

Well what an interesting few days it has been, first of all someone emailed me about sending our story to 20/20 so I did, expecting that if they wanted to do a story then it would be an afternoon thing, I had spoken to Chris and he seemed fine about it, anyway sent it of last weekend and then Monday morning, I get the phone call from them saying they would like to do the story, and the guy doing the story will contact me later that day. Later that morning, I got a phone call from him giving me some more info, it was not just going to be a an afternoon, but 3 days with cameras following us...... ummmmm. First of all Chris was really excited and said yes lets do it, anyway I asked them to ring back the next day as Tuesday we had our appointment with the psychologist and we wanted to discuss it with him first. Anyway Tuesday morning came and Chris came into my room, tears and all, I asked what was wrong he said he was worried about the TV program. So we sat down and talked about it and said that if he was that worried already we would not do it. He said he was not ready to show heaps of people his tics and his OCD stuff..... so anyway we talked about it with the psychologist and decided that at this point of time, it was not good. So contacted them and they have said they would still like to tell the story but maybe later so will see how things are going in a couple of months time maybe.

Chris has had another pretty good week, enjoyed horse riding last week again.

Cheers all and have a good week

Womens Weekly Article on Tourette Syndrome

ok if you ave not read the article on Tourette Syndrome yet check it out here in the media blog

Now this is my personal blog and I will give my personal opinion here....... First of all 99% of people with TS are not males.

I feel saddened to read this, this girl does not just have TS, as you all know I am no expert but I have a son with TS Plus, and a daughter with suspected TS and I have spent many many many hours researching, reading and talking to people with TS, so I feel I have a right to comment. Please set me straight if I am wrong.

Now I have never known a person with just TS to scream for 6 hours because the Crocodile man has died and she can not meet him, I have never ever known a person with just TS to scream for 3 hours with 1 teaspoon if ice-cream. I have never known someone with just TS to scream for hours on no end for no reason, I have never known anyone with just TS getting paranoid and having illusions etc...... Now yes I have heard of people with TS and other disorders have the above.

I have emailed the Women's Weekly and sent then some facts, I would also like to know where there accountability is when it comes to this.

My god if my child was just diagnosed with TS and I read this and thought that this is what TS I would be freaking out...... this is so out of context. Don't get me wrong I am not saying she does not have TS but she also has other issues. She either needs another doctor, or the mum needs to do some research herself. In the article she mentions there is minimal information out there about TS, yes for New Zealand there is, but there are some amazing wonderful international sites which have so much information in them. So please if you are reading this with a newly diagnosed child with TS don't panic this is so inaccurate.

Gees if I blamed all Chris's ADHD and OCD etc on TS my doctor would be setting me straight quick smart, which brings me onto another worry - who is her doctor telling her this is all TS, or is she getting muddled. My big concern here is that if the doc. is labelling everything under the TS umbrella the this poor girl is going through hell because of a misdiagnosis. The old saying goes "Remember we can only help the child with the correct diagnosis" and in this case TS is not just the only diagnosis she should have. I feel for this child......

I emailed this part as well as some other facts to the Women's Weekly

Do all people with TS have associated behaviors in addition to tics?

No, but many do have one or more additional problems which may include:

Obsessions which consist of repetitive thoughts which can become unwanted or bothersome.

Compulsions and Ritualistic Behaviors which occur when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even things up" or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it "sounds right." Repetitive copying and erasing of work in school can be quite disabling.

Attention Deficit Disorder with or without Hyperactivity
(ADD or ADHD) occurs in many people with TS. Children may show signs of hyperactivity before TS symptoms appear. Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision; and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties and the need to move constantly. ADD without hyperactivity includes all of the above symptoms except for the high level of activity. As children with ADHD mature, the need to move is more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control may persist.

Learning Disabilities may include reading and writing difficulties, problems with mathematics, and perceptual problems.

Difficulties with impulse control which may result, in rare instances, in overly aggressive behaviors or socially inappropriate acts. Also, defiant and angry behaviors can occur.

Sleep Disorders are fairly common among people with TS. These include difficulty getting to sleep, frequent awakenings or walking or talking in one's sleep."

The above information is from the TSA website.

I have emailed the article to many people who have dealt with TS for years and they all feel like me there is a hell of a lot more going on here than just TS. I will leave it here but would love to have your comments please......

OCD Monster on vacation

"Mum the OCD monster is on vacation" these are the words my son expressed yesterday...... and he is true, it is just about like having an OCD kid free home LOL. His tics have increased but hey give me tics over OCD anyday.

First of all we have 2 meals at the table this week, and no issues, ok a few issues with the food and not eating it, but hey he tried it didn't like it so didn't eat it - but he tried it though just a normal kid thing, we could talk without him vomiting thinking we were spreading germs!!!!!!!!!

He even ate the homemade lasagne and loved it, he has not had it for months because he thought it had a bug or something in it last time and refused to eat it, I made it dished up mine and Stephs and told him he could make hamburgers as he does but he smelt it and said yummm can I have some, I had never moved so quick to get some on his plate. !!!!!!!!!!!!

Went to the horse riding place on Tuesday and he used there toilet..... my god he came out and I am sure my mouth was wide open. He NEVER uses other peoples toilets!!!!!!!!!!.

He is not questioning every move I make when it comes to food!!!!!!!!!!!!!!

My god he is even eating food I have touched!!!!!!!!!!!!

We went 10 pin bowling and he didn't worry about wearing other peoples shoes!!!!!!!!!!

Don't get me wrong there are still a lot of OCD stuff there but we are enjoying the small break lets hope the OCD monster stays away for along long time....... Yesterday we went to the equestrian place and I bought the kids a riding helmet each. We have had such a good week OCD wise, it has been awesome. Long may it last.

I will leave you with a couple of photos for Trinty Valley Farms

Chris brushing Shadow
Steph trotting with Monty.

My kids love this place and I give it 10/10. Pete who runs it is awesome with the kids, so if you ever want to go to horse riding lessons in Tauranga, I would recommend this place. I can not speak highly enough of this place. And seeing the smile on my kids faces is worth it all.

Had our psyc. appointment

Well Chris did actually and all in all it went great - no change in medication we talked about the tics and have decided to try and teach Chris how to handle the tics rather that use meds. Also we discussed when school starts that Chris goes in from 10.30am - 12.20pm rather than the first morning block, where everything is busy and also then we don't need to add the morning med of Rubifen as the Concerta will have kicked in by then, which in return means his tics won't increase because of the stim meds.

We also discussed a few ideas about his OCD and we decided to have one night a week we will eat as a family meal at the table, and if he gags and pukes and doesn't eat so be it. We will make it a fun meal and we decided tomorrow night was a good night as his OCD seems to be in a waning period at the moment, so tomorrow night we are going with the Dutch theme. I will not do a complicated meal where I have to touch the food but a simple meal where hopefully we can all eat at the table. The goal is to eat all together without him puking.

Anyway am feeling pretty good about it all, maybe it was the break from the kids, maybe the psychiatrist has changed my way of thinking don't know but know I will go with it for now anyway.

A great doco on TS

If you have access to the Documentary channel, I highly recommend you watch the documentary on Tourette Syndrome, it is a medical mystery documentary and well worth a watch, I know it is on a couple more times this month.

I have it on DVD and it can be loaned out for those who don't have access to it. Just email me at tsnz@xtra.co.nz.

Anyway it was an awesome documentary and featured Dr Oliver Sacks as well.

A Plug for Kiwifm

Thanks to Karyn Hay and Andrew Fagan for allowing me to speak tonight about Tourette Syndrome.

Support them Kiwifm

These guys are awesome - Thanks Heaps :).

I remember watching Karyn Hay on Radio with Pictures and Andrew Fagan from The Mockers bought back some memories of those days.

Anyway just want to give them a plug for allowing me to talk about Tourette Syndrome and Shortland Street tonight.

Time is flying by....

Well not a lot to report, had our appointment with the psychologist yesterday, am finding it all pretty tough at the moment..... I am so sick of having to walk on eggshells to accommodate Chris's OCD.
Chris seems to have taken a few steps back this week with a lot of anxiety slipping in, On Sunday morning, he had this horrible panic attack, which is proberly the worst one I have seen on him in a long time. Lucky by about Tuesday he started picking up again.
No more update on the school and proberly wont know any more till end of term 2 - which makes Chris one happy boy the longer he is off school the happier he is.
The kids are off to there dads tomorrow for about 5 days yippee a nice break for me - have been making some changes to the website making all the links on one page etc. I think it looks tidier.

Anyway am outta here and will return next week, have the pdoc appointment on Friday 13th so will report after that.

Have a great Easter weekend all and stay safe.