Our life Living With a Teen With Mental and Neurological Stuff.....

What a busy 6 odd months we have had.....

2010-01-30T07:24:00.003+13:00

First of sorry for the delay in blogging but when you read what we have been up to you hopefully will let me off.....

I met this man last year and over the Christmas holidays, I moved to Rotorua to be with him , yes we sold the house and made the big move. The kids are doing well considering, they are about to start a new school again next week. Chris had a pretty good first 6 months last year but the last 6 months in school went a bit ummmmm lets just say not so good. But he has a new beginning this year so cross fingers please :-).

High and Complex Needs well lest just say some of it is awesome, other parts of it not so sure, at the moment we are in the process of transferring it all over to the Rotorua team.

Chris had a mentor from Healthcare NZ last last year for nearly 3 months, this guy was fantastic with Chris and Chris related to him so well, anyway he taught Chris snorkeling and Chris loves water so we have enrolled him in a Diving Course in March... he has also started at the gym and thanks to his mentor his confidence and fitness level has increased. His Tourettes are pretty much non-excistant right now but his OCD is shooting up but we think it is because of the stress of the move and starting a new school etc so hopefully that will come right over time again.

We are all going to Aussie in May to the Gold Coast, it is a kids holiday and David and I will be going to Sydney some time later in the year, just the two of us.

All in all things are going pretty well...... will be back soon in a couple of weeks to let you know how school is going.

Attitiude TV and High and Complex Needs Update!!!

2009-06-08T10:24:00.006+12:00

UPDATE: Found out the High and Complex Needs has been approved a long 2 years but we got there.....

Well we hit the TV screens yesterday at the moment you can watch it "here", click on part 3 but I think it is only available to New Zealand viewers only but come about Friday it will be available on Youtube which I will post a link to.

Tomorrow is decision day for the High and Complex needs, and we should hear within 5 working days so as you can tell it will be a stressful week for me.

Don't forget to check out my other "blog" to fund raising for Mental Health, which I was doing the 1/2 Marathon but due to my leg still playing up have changed it to a 2.8K surf swim.

Here it is on YouTube:

So whats been happening......

2009-05-21T11:13:00.002+12:00

A hell of a lot - still waiting on the High and Complex needs but finally after 2 years they tell me I will know the outcome by the 16th June, so fingers and toes crossed it is going to be a good outcome.

Chris has been doing awesome apart from the last 48 hours, not sure if he is having waxing mood swings if that is possible but he is having them and also he is ticcing quite a bit.

Chris for the last 3 nights has been eating dinner with us at the table and better still eating what we are eating that is a huge breakthrough been years since that has happened long may it last..... we also have been working on his social skills and he is now eating of cafe plates still working on the drinking glasses though.

There was in incident at school last week which has knocked Chris back a bit, I can not discuss it on here at the moment, but it involved a teacher aid (no not his one) and Chris at the moment the school has put it in the hands of the lawyers/unions etc.....

Chris has come so far the last few months it is wonderful, certainly still a battle but I feel like we are getting somewhere. It is not Chris giving me the stress it is dealing with things like High and Complex needs, the incident at school last week etc etc anyway thats it for now I will let you know as soon as i know about the HCN but cross fingers for me it will get approved please.........

My 1/2 Marathon Challenge...

2009-03-25T20:06:00.001+13:00

I have set myself a challenge to complete the 1/2 marathon in Taupo in August, I have set up a blog and am using it to fund raise for Mental Health Foundation of New Zealand. To check out the blog click here

I am looking for people to join me so go check it out :-).

Our Day with Attitude TV

2009-03-20T19:56:00.004+13:00

Today was the day and what an awesome day... the team that came down were fantastic...... we could not have asked for a nicer group of people to do the filming..... so Thank You!!!!.

Chris was really relaxed with them and it was just a fantastic day and on that note I will leave you with pics.......

Curtis (Presenter) and Chris

Lunch at the Mount

Mount Beach

Cameraman

Director and Cameraman

Steph, Chris and Curtis

Director

Sound Man

Curtis and Me

Wednesday.... 18th March 09

2009-03-18T05:00:00.004+13:00

Just a couple of photos of Chris at the Special Olympics school swimming the other week.. got to love that smile :-)

Well got a phonecall from school yesterday at about 11am could I come and pick Chris up his neck was so sore, so picked him up after a meeting I had for him at lunchtime, gave him Brufen and into bed slept all afternoon, got up for a couple of hours and then back to bed to sleep.

I think the hardest thing I find with his ticcing is the pain and exhaustion that goes with it when he tic's badly..... he has woken up and his neck is still tight and stiff.... and he says it is still really sore so not sure if he will go in to school today or not.... it is a good thing I don't have a job.... Yesterday I had a meeting, and then I had to go get him at 12pm, today I have his IEP (or whatever they are called, GSE change the names of stuff all the time) at school and then have Jan from Youth Horizons coming to work with Chris on some OCD stuff this afternoon. Tomorrow have another meeting for him so tell me how I am suppose to fit a job in there as well..... Monday we have an appointment at the hospital with the psychological services at the public hospital - and no it is not the Child Adolescent Mental Health team - have no idea who they are an appointment card came yesterday in the mail was going to ring and find out who they are but hey might leave it for a surprise.... lol.

As Chris said yesterday oh well the TV cameras will have good coverage of him ticcing if he is still like this on Friday..... I said the one thing I love about Attitude is that they are not there to film him ticcing (unlike some other TV programs we have been approached for) they are here to film him as a person.... and on that note my day begins so catch you later all :-).

What I love about Chris is that when people ask about his tics, he just causually says "oh I am going through a waxing period with my tics" whereas a few years ago, he would not go anywhere cause he was so embaressed about them but now he accepts they are part of him and will just talk about a lot of his stuff now......and we all know that once these kids accept there disabilites they are the ones that will best educate the public.....

16th March 09

2009-03-16T20:46:00.002+13:00

Well after not seeing tics in months and months (well not bad ones) Chris is having bad ones again now, all neck and head movements but bad enough his neck is sore.... bugger bugger bugger... have no idea why he does not seem stressed.....

Apart from that all is going well still, he is more settled this week after not having a great week last week both at home and at school.

This Friday Attitude is coming for the filming, he is excited about that so maybe that is what is causing the tics... anyway not much else to say so on that note am outta here will be back on the weekend with an update on Friday and hopefully some photos of the day :-).

Another update....

2009-03-05T14:54:00.003+13:00

Well after decreasing Chris's meds, we are increasing them again, lets just say he got into a bit of trouble at school, why a combination of things I think, 1 being he has this whole new world open to him (school) and he is trying to see where he fits in, 2: the decrease in meds I feel had a part of it as well. Anyway things are improving again.

Chris is loving school which is so nice to see and it is lovely to see him smiling and ready and rearing to go when the taxi arrives to pick him up.

Some more great news is that Attitude TV (Channel 1 Sunday 9.30am) is coming to do a story on Chris on the 20th March, I am pleased about that as they are not going to focus on just the Tourettes or OCD but they are going to focus on him as a person with mental and neurological issues. If it makes 1 person understand kids like Chris better then it will all be worth it and also knowing what sort of stories they do it can only be positive. Chris is excited about this too.

Chris did the school special olympics swimming the other week, his relay team got a first and he got a second for 25m freestyle and third in Breastroke, which was meant to be Backstroke but somewhere along the line they got it muddled but was proud of him for doing it anyway.

High and Complex Needs well this is still ongoing, the application is going ahead again so cross fingers we will hear in the next month or so.

We also have Youth Horizons Trust wrap around program in our home, right now we are working on some of the OCD stuff... she (Jan) has only just begun and I can see it will be a long and slow process but just maybe we can work trough this OCD stuff.

So yes quite a bit has happened but right now Chris is doing ok and he is happy and I couldn't be happier right now with that..... back in a couple of weeks to let you know how the filming goes.... anyone know how to lose 30 kilos in 2 weeks lol.....

Have fun and take care all catch you soon :-)

2009 Catch Up.....

2009-02-14T04:41:00.002+13:00

Well lets go back to the holidays, over all Chris had a great holiday he is so much happier at the special needs unit at Otumoetai College and I give the staff and the unit 10/10. It is a fantastic place and for Chris it is ideal. We used emergency Respite a couple of times that was all over the holidays. Huge thanks to Youth Horizons trust for giving us this respite. There was one sad moment in the holidays one of his classmates in the unit passed away Boxing morning, he was in Auckland so never got to the funeral but we did visit the grave on his return and the school had a memorial for her last week was beautiful RIP Queree xx

He spends some time in the unit and some time in the mainstream with a teacher aid, he does English, Maths, Cooking yes cooking and Tech in the mainstream. He has made some friends which is fantastic, he is happy and looks forward to school every day, in fact he can't wait for the taxi to come and pick him up.

At the moment things are going just brilliant and I really could not ask for more.

Don't get me wrong things are still far from normal in this house - but then what is normal, have no idea anymore lol..... We have even decreased Chris's anti psychotic meds again now he is settled. Youth Horizons also have a program where they come inside the house and work along side us as a family and work on behaviour stuff and also his OCD stuff which is the killer. I met Jan last Thursday and she is meeting the kids next week and we will begin, I am excited about that especially if we can work through some of the OCD stuff......

Right now for Chris I think life is pretty good, and I hope so much that this year will be the year he stays at school full time, wow how exciting is that. The High and Complex Needs application is once again going ahead..... I am not even going to start on that how frustrating that is.....

Anyway back soon with an another update.....

Merry Christmas ....

2008-12-12T06:38:00.002+13:00

Hi all, well Chris has settled down again, school has finished for the year, he enjoyed the last couple of weeks at college doing transition for next year, the same teacher aid is continuing with him next year which is great.

We upped the anti-psychotic meds both mornings and nights and think that has helped heaps.

We have been approved crisis respite for the holidays which is fantastic cause at the moment Chris is very high needs and I am exhausted... they are off to their dads on Christmas Eve and back the 4th January, so will get a decent break then.

Chris has been doing some animation with lego so thought I would post it here... the quality is not that great cause he was using a webcam.... but have said to him I will look at trying to get him a decent video camera next year.

Anyway have a wonderful Christmas all and I will catch you all in the New Year. Stay safe :-)

Chris slept through....

2008-11-22T05:39:00.002+13:00

Chris enjoyed the college again yesterday :-).

Heard from the psychiatrist and we are upping Chris's anti-psychotic in the morning for now. I did give him an extra med last night and he slept through the night the first time in about 10 days :-) (the meds make him tired till he adjusts). I have now locked away all the sharp knives as again yesterday I caught him cutting himself.

Think today we will have a quiet day just cruising :-)

Friday Morning...

2008-11-21T05:59:00.001+13:00

I am out of routine and I hate it, I love routine like Chris.... discovered Chris had cut himself some more on Wednesday night. he had new cuts on his arm yesterday morning, they are still on the top of his arms but are getting deeper :-(. He went to the Intermediate yesterday to watch the trolley derby (with his teacher aid) and to collect his books, another kid saw the state of his arms and asked him how it happened -
Chris: "I cut myself"
Kid: "why"
Chris: "cause when things are hard I want to hurt myself, it makes me feel better"
Kid: "when I am sad I eat chocolate that makes me feel better"
LOL I could so relate to that last comment.... speaking of chocolate I have been eating a bit to much of it the last few days....

Today he has the college for the morning, and he is looking forward to that.

Another day over...

2008-11-19T17:35:00.002+13:00

And Chris had a wonderful day at the college, well till 1.30pm anyway. He walked out he was smiling and laughing, the learning support unit I think will be a great success for him. We have just been approved another 7 hours a week teacher aid hours so am hoping the school will let him go there 4 mornings a week for the last 2 weeks. Else I think we are allowed to use the extra hours for the teacher aid to come to the house. He is even talking about wanting to do the special Olympics next year. The school is also happy to adapt to his OCD needs as well. Today he even made a pizza and ate it something he would never have done at the Intermediate. And I think he even used the toilet there.... this just means how safe he is feeling in that environment.

Had our paediatrician appointment, today I had not mentioned this but he had low cortisol levels and has been having blood tests etc, he also had a 24 hour urine test a few weeks ago but that has come back normal so we will wait and see what happens and how it is when we go back in 3 weeks. They did a puberty check and he is ok there for now as well. He is still gaining a bit to much weight to quickly which is a concern but we are very closely monitoring him there, the meds he is on is certainly not helping there.

Anyway am feeling much more positive today about it all :-)

Decisions have been made....

2008-11-18T17:12:00.003+13:00

Chris had another rough day, and I was rung up at about 11.15am to come and get him, after an emergency meeting Chris will only be going to school minimal hours. He will be doing 2 mornings a week at Otumoetai College and will do a couple of hours at the Intermediate, he will have to have a teacher aid with him at all times and we are hoping to get some additional hours, his current teacher aid will go with him to the college. So today we went and got him a uniform so he looks the same as the other kids. He is ticcing like crazy and the kids were teasing him like crazy today about it. It just breaks my heart when the kids do this.

I am trying to get hold of the Psychiatrist to see if we can up his anti-depressants to get through this.

I am tired and exhausted from all this.... I am sick of battling the education system to find a place where my boy will fit. As for the High and Complex Needs they have decided yet again to get the application up and running again, I think they finally have realised that he has high and complex needs, what I don't understand is why it took him to start self harming again and hit depression for them to realise this.

Been a while....

2008-11-17T17:44:00.004+13:00

First of I am sorry about the long delay between posts but have made a decision to update more regular from now on, just that things were going pretty well.

Well what a year... what has been happening quite a lot. Chris had been back at school full time since term 3 with a part time teacher aid. At the beginning of term 3 he decided he wanted to go to school alone, which was not a good move, he started deteriorating and beginning of term 4 we reinstated her.

Chris's tics up until the last couple of weeks have been hardly there, you would not even notice them. Just lately in the last couple of weeks his facial tics have returned. Right now he is not doing well after such a positive year, he has been having a hard time at school with bullying and being bullied.... and things have got pretty bad. He has been having a few night terrors again and his sleeping patterns are all out of kilter. He has also started self harming again and not just at home but also the school.

We are really beginning to think Chris may have bipolar. He fits the bill perfectly and his mood swings are so up and down and he changes so quick, he is going through changes of depression then he will hit a high. Right now he is going through a state of depression and like I said above he is self harming again, he is talking about wanting to commit suicide as he feels it would be better than living right now. Needless to say we are keeping a very close eye on him right now.

His OCD is still bad but has not got any worse, well most days anyway. Next year he is going to college and he is going to Otumoetai College to there Special Needs Unit, where they have like 1 teacher and 2 teacher aids to about 8 students. I think this will be perfect for him he has had 2 transition days and really enjoyed them. He is still going to respite which is great and his High and Complex needs application has been stalled a long story.....

Anyway just a quick update for now and I am hoping to be back at least once a week from now on :-)

March 2008

2008-03-13T05:25:00.002+13:00

Well here we are, been a while.

Chris is doing really well at the moment, We have started Chris on Quetiapine (Seroquel), and this as helped with his mood swings and also his Tics. Chris is back at school 2 hours a day - 3 days a week with a teacher aid and actually enjoying it. We are hoping to increase these hours over time. We have taken him of the Concerta, so currently he is on Fluxotine and Quetiapine and this combination is working a treat. He is now starting to go to friends houses again and just generally feeling a lot happier and more stable. His school is fantastic and his teacher is awesome and Chris really likes him.

Chris is also going to respite fortnightly for a day and loves his caregivers. As he said it is his other family :).

We are still waiting to hear on the High and Complex Needs, hopefully soon.

Anyway just a quick update catch you all soon :)

Cant have been this long......

2007-11-14T09:20:00.000+13:00

Ok where are we at - a number of things have happened over the past few months, first of Steph got diagnosed with Epilepsy and is on meds which have helped, they still need a bit of tweaking though and go back this afternoon.

Chris had a $1500 emergency fund approved to get him a teacher aid part time, She has started and comes 3 times a week for one hour a day - but as from Monday he will be going to Tauranga Intermediate 3 times a week for 1 hour a day, small steps. He will not be in a classroom but will be just getting used to a school environment etc and am hoping by day 1 next year he will be able to start again, it wont be full time but will be part time. In the meantime for other funding we are going through High and Complex Needs so fingers crossed for that.

His medication has changed and we have increased his fluxotine which has helped with his stress which has decreased which in turn has helped with his tics.

His tics have been really good for a while now, still has bad days but generally pretty good.

Anyway will be updating now more regularly so keep checking.

For Terry in Atlanta Re: Rubifen

2007-07-02T07:36:00.000+12:00

My son was on Ritalin slow release and Rubifen, he was on 20mg Ritalin in the morning with10 mg Rubifen and then he took a 10mg Rubifen at 3pm. So his daily total was 40 mgs which for Chris is his cut off point as any higher and it affects the Tourettes. We had great success with this combination for 18 months the only downside with this was that when it wore off we had extreme highs and lows so he would be high as a kite till the Rubifen kicked in which only took about 30 minutes and then at night once the final Rubifen had worn out he would also be over the top. We found the Rubifen lasted about 2 hours in his system. We have changed now to 36 mg Concerta and though it takes a bit longer to kick in the morning we are not getting the real extreme highs and lows at the beginning and end of each day.

We had Chris's psyc. appointment last Friday not to much to report there, discussed the tourettes a bit and the increase in tics, we are getting a referral to the physio for his neck and back as the tics are making it very sore for him, we talked meds again and have decided not to try them just yet mainly for the fact that he is not at school, if he was at school we probably would have done it. Tomorrow we have the psychologist again.... then on Friday we have Steph's appointment with the same Psyc. I discussed Steph briefly with him last week and agreed with me that she is not clumsy and he also does not feel she has ADD or whatever but agrees that yes it sounds like Absence Seizures, so he will do a referral to the paediatric neurologist and to a paediatrician and order an EEG. I am not sure if I mentioned what happened at the GP when I asked for a referral for Steph, for a couple of years she has always dropped things sometimes up to 40 times a day she also lately has been having a lot of times when she zones out her school work has deteriorated in the last 12 months anyway went to the GP concerned as her teacher had also mentioned that she was "zoning" out at school at times. He told me in front of her that she was clumsy and needed psychological help so he referred us to CAMHS (Child Adolescent Mental Health) so hence why we are of to the psyc. when he should have really referred us to a paediatrician. Anyway the psyc. at CAMHS is awesome and he will do the referrals. I will tell them that we will go to Waikato for the appointment so that we can be hopefully seen quicker as they only come to Tauranga once a month I think that neurologist that is. Beginning to think CAMHS is our second home, but I just want to put a plug in for them from me, they have been fantastic and without them we would not be where we are today. They were our lifesaver when we hit an all time low.

GSE came

2007-06-26T11:55:00.000+12:00

and all in all is was successful, at this stage we are just going to focus on getting Chris back to school forget the educational side of it for now. She was lovely, spoke to Chris, listened to him and liked his mice, so that was a bonus, if you like his mice he will like you LOL. Anyway will know more in a few weeks.
His tics are still bad, but I think they are getting slightly less, he told me had 22 facial tics that he knew off LOL. We have the psychiatrist appointment on Friday so will catch you after that.

Guess what I got on Monday

2007-06-24T08:29:00.000+12:00

On Monday I got phone call from GSE (Group Special Education) they are coming out tomorrow Monday 25th June at 1.30pm. So will let you know how it goes.

Tuesday we had our fortnightly psychology appointment, went well, have decided to not make Chris go to cooking tech classes due to his OCD, the psychologist feels it could do more harm than good. Oh well tech was good while it lasted. He actually didn't go to tech on Wednesday his tics were so bad, his neck was so sore that we even went and trailed neck braces to see if they would help. I am not sure what I can do to help or maybe we just got to wait it through....... any suggestions please!!

I have set up survey on TS on the main page of the website and results can be seen here.

This week we have GSE tomorrow, and psyciatrist on Friday - then school holidays yippee. My girl has camp on Wednesday and back Friday. Then next week we have her appointment.

Anyway catch you in a day or so to tell you how we get on with GSE.

About time I did an update

2007-06-17T08:33:00.000+12:00

New Zealand seems to be making the headlines with Tourette Syndrome check it out here.
Enough said!!!

Ok what have we been up to, well surprise surprise no contact from GSE (Group Special Education) yet, I feel 10 weeks is plenty long enough so am now going to start putting the pressure on, first with a phone call this week. School is going ok, well the 3 hours he goes to school, he has actually been attending tech class by himself, so that is a biggie. Just a shame we only have about 2 weeks of tech left for ICT and then he goes to cooking, well he wont be going thanks to the OCD monster..... for Chris food, and cooking utensils and cutlery and crockery are his OCD issues, he was freaking out about it and nearly vomiting of the thought of having to touch other dishes people have touched. He wont even touch our plates hence why he has his own. Anyway am going to talk to the psychologist about it on Tuesday and see if he has any options on how we could possibly do it, then after cooking they have drama or whatever they call it now days, and for that they have to do a singing solo act so another tough one when you have Tourettes.
His tics have increased again and he has this lovely back one, where he arches his back and it keeps clicking and wonders why he has a sore back..... also another latest is clicking his jaw all the time..... GGGRRRRR. Vocal tics are still certainly there as well.

Well onto my daughter, have been having a good chat with the teacher and we think she has all the classic symptoms of Epilepsy especially Absence Seizures these seem to be getting worse over the last few months, the teacher has noticed and this will explain the dropping things, the stopping midway in conversations for a short amount of time, then either carrying on a conversation, or forgetting what she was saying the "daydreaming" she is having in school, falling further and further behind in school when she was a kid 18 months ago, that never struggled. It answers so many questions, have contacted the Epilepsy Society here in NZ and she said it is all the classic symptoms so is coming out to see me tomorrow to talk to me as it could be 6 months before we get to see the neurologist and get an EEG and any other tests done etc......... This will explain why she can sometimes be carrying food to the table and just drop her plate and not know why.... I am now wondering if what I thought was tics may be a seizure. We will still go to CAMHS in 3 weeks, and get them to do a referral to a paediatrician and a paediatric neurologist.

Oh well thats about it from us for now catch you soon.

Beware long rant ahead

2007-05-26T07:13:00.000+12:00

Anyway had our psychologist appointment last week, went well not a lot to report there, but we did discuss Chris going to school maybe one more block a week, so had a meeting last Wednesday with the current school he is enrolled in. Well we had it at 8.30am so that his teacher could come for 10 minutes well she was not there, not even sure if she knew it was on so not blaming her at this stage. Anyway had the meeting with the SENCO (Deputy Principle) and health school teacher and Chris and I, well I held my mouth shut for most of it then walked out and burst into tears. We are still waiting on GSE so no funding yet for a teacher aid. What a bloody waste of time, I really feel like they can not be bothered - I said to them that I would be attending school with Chris like I do for tech. until I know he feels OK about school, they said yes it would be a good idea to go for one or two sessions, I said it would be a lot more than that, I would continue to go until the psychologist and I both thought he was emotionally stable enough to cope alone. I also mentioned I had done teacher aid work for 5 years and have the teacher aid certificate etc.... and considering he is in a class of 32 low achievers I said I was more than happy to help the other kids but still be there for Chris if needed. The reason being I can pick up the tics well before they get to bad, I know when he is about to have an anxiety attack. They basically told me that that was not possible because they wanted to keep the class as normal as possible, fine keep the class as normal as possible and let the kids struggle. I said I was not risking Chris going back to where he was 18 months ago and they had no idea what it was like. GGGGRRRRR. Not once in 6 months has the school bothered to contact me how Chris is getting on, and also in that time I had never meet the SENCO even though he had been in our Tech class but never bothered to introduce himself to us. Anyway walked out and burst into tears and decided that that school was not for Chris, I mean to say 900 students 2 teacher aids in the whole school no other kids with special needs, why because they all go to Tauranga Intermediate. Anyway was talking to the health school teacher and asked her if I was being overprotective.... I am beginning to doubt myself as a parent. Anyway got home and rung the Tauranga Intermediate and made an appointment to see them Thursday, had a meeting with the SENCO there and she was a lovely lady, introduced herself to Chris , spoke to Chris, asked him if he had any questions, she then spent the next 20 minutes showing us around the school. Such a difference in attitude, and they have a roll of 1200 but about 15 teacher aids. They also have ORRS funded children, other children with all different levels of special needs etc. Chris felt much more comfortable in this school. So before we left we placed his name down on the list for out of zone kids and find out in October, for next year. This year we will just continue to do the tech classes and wait for GSE to see if they can help in anyway. If not then I will get another SPELD assessment done on him towards the end of the year so that Tauranga Intermediate have something to go on. I just feel that at this school even if we don't get funding that they are better equipped to accommodate Chris and his needs. And that was the school he chose out of the two. I know no school is going to be perfect.......
Still waiting on GSE apparently they are way behind in assessing Chris because they are short of case workers.........
Anyway onto other things horse riding is still going great........
Steph is a lovely pink cast now with glitter and is allowed to do a bit of horse riding now......
Oh yeah heard from the Women's Weekly and they are publishing my letter to the editor.

Chris favourite mouse has a sore foot and he has been stressing the poor kids tics have gone way up again. Anyway just to end a photo of his mouse.

Kids are in Auckland

2007-05-19T08:32:00.000+12:00

Was beginning to think Chris would not be going as we decided that if the Concerta had not arrived then he would not be going.... Anyway 5 minutes before we were due to leave the pharmacist rang and said his meds had arrived.
What I could not believe is the difference in him especially with his vocal tics, they were loud now this is the first time that we have been without his ADHD meds since the tics have gotten so much worse, is motor tics were hardly noticeable but full on vocal tics all day and all different ones.... it was really interesting.
Have an appointment at CAMHS for Steph on July 6th, so am pleased about that. Her tics don't seem to have gotten any worse, but still tics daily but just less obvious than Chris. Her teacher is also pleased we have a referral, as she has some concerns too. She is actually in a cast now, she fractured her arm, so she is not happy because she is not allowed to ride. We go back on Tuesday and they will decided if she needs another cast or not.
Well heard back from the Women's Weekly and they are not prepared to do anything about the story, as it is her personal account of a story here is the letter that I responded to again and have not heard anything surprise surprise

There response: "This was Audrey and her family's story and told from a personal angle. Every case is different, as you know. Please feel free to send a letter which can be considered for our letters page"

My response:

"Yes I understand it is a personal story told from a personal angle, but I also feel that the Women's Weekly has some responsibility in making sure that the correct information is put out there. I feel that you have chosen to publish the story, that you have a responsibility there.

Another words anyone can write anything no matter how inaccurate the story is..........

Yes every case of Tourette Syndrome is different but there is no way that what was described in that story was just Tourette Syndrome and that is my concern. Like I said I have had parents contact me worried that what your story portrayed is Tourette Syndrome. I am having to reassure them that, that is not the case.

Also on a personal level for my son it is stories like this, that make it hard for him, as it is such inaccurate information.

People with Tourette Syndrome DO NOT behave like this child.

Now that I am aware that the Women's Weekly is just gossip and not accountable journalism I will no longer be buying it and I shall be informing others of your shallow approach to stories."

So I have sent a letter to the letters page......GGGRRRRR.

May 16th 07

2007-05-16T22:52:00.001+12:00

Well does time fly when you are having fun..... The horse leasing is going well, both kids are really enjoying it. Apart from the fact Steph is in a cast at the moment, fractured her arm, so not impressed because she is not allowed to ride.

Chris is doing OK apart from the fact that he is currently not on his Concerta, the suppliers in NZ have run out of the meds.....this is making an interesting few days. We have a meeting with the school next Wednesday morning, re integrating him back to school. I don't know what the hell is happening with GSE have not heard a bloody thing from them.

Also speaking of not hearing from people, I have not heard back from the Women's Weekly and there inaccurate description of TS, so have sent them of another email today and will ring them next week if still no response, I am not going to let this one slide.

Oh well that's it, catch you in a few days.

May 8th 07

2007-05-16T22:51:00.001+12:00

Well things seem to be improving the motor tics are still there but the verbal tics are dying down again........
Last night we went to Circus Quirkus These guys tour around NZ and Australia doing shows for special needs, they are awesome and do an excellent show. Tickets are all sponsored by local, businesses, so t is accessible to all families. What I love is that they start on time, and the show is only just over 1 1/2 hours long just long enough for kids with short attention spans. They do shows yearly.
Had our first horse leasing yesterday went ok, considering we were a bit pushed for time to get to Circus Quirkus.
Chris seems a bit out of sorts lately, not sure why..... proberly just the tics exhausting him, well he said that he gets tired from them and they frustrate him.
Today we have the psychologist.....
Well that's about it for now

May 1st

2007-05-16T22:47:00.001+12:00

Well Chris's tics are back again in full force the last couple of days lots of motor tics, today he has started a new verbal tic, now I am not used to verbal tics as Chris's only last a few minutes at a time, but today he has started neighing like a horse, every few minutes, now this is taking some getting used too. He even ticced heaps in tech class last Monday, normally he can disguise them quite well there.

He went horse riding today and enjoyed it, helped Pete with breaking in a a horse and loved it!!!!!!! Tomorrow his teacher comes and we have tech......

Well that's about it, all else is going well :)

An interesting few days

2007-04-28T14:15:00.000+12:00

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

2007-04-20T06:41:00.000+12:00

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

2007-04-19T07:10:00.000+12:00

"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

2007-04-13T21:15:00.000+12:00

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

2007-04-08T21:02:00.000+12:00

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

2007-04-05T20:02:00.000+12:00

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....

2007-04-04T21:45:00.000+12:00

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.

An ok week.

2007-03-30T20:51:00.000+12:00

All in all a pretty good week, have decided Chris is a lot more focused with the Rubifen in the morning, which of course means he tics more, had to leave tech. class early on Monday as he was just dripping with sweat and it was not hot in there, I think it was from ticcing as well as trying to hold some of the tics in, well he said it was from ticcing. One thing with Chris with his verbal tics they only really come out when he is excited.

Well after what I thought was a positive meeting with GSE etc last week they had another one on Thursday and it likes we will be trying to find funding through High and Complex Needs. Had never ever heard of these guys before last night.

On Tuesday Chris had this new tic which I was not impressed with, in fact it is a tic that I am not sure I will ever get used to, lucky it only lasted a day and has not come back, it is a spitting type tic, he makes this funny blowing noise and spits everywhere..... YUKKKKKKK LOL.

Have found Shorty Street interesting, the Herald had emailed me about an interview which I did..... they tweaked a few things but hey it got heaps of hits on the website so is arguing. Also through it I have had some amazing emails from people with family members with TS. So on that note, it has all been positive.

I get google alerts for Tourette Syndrome, and it is amazing the amount of trash that is out there...... anyway have a great weekend all, and hope you are not rained out there in some parts of NZ.

Saturday and no kids

2007-03-24T07:24:00.000+12:00

Both the kids at there dads for the weekend, pure bliss.

OK they had a meeting about Chris's options for school last Tuesday and what they have offered looks quite good. If we can get what they have offered I will be stoked, I can not write to much at the moment as I am not sure who reads this but we are looking at teacher aid hours, a great school, so cross fingers/toes etc. Will hopefully know more after Thursday.

Oh yeah we also got $200 approved for Chris's horseriding lessons, so thanks Halberg Trust and also we have managed to get his meds paid for by his Disability allowance which is another great thing, because I was really wondering how I was going to pay for this all. His Concerta is about $145 a month.

Watched Shortland Street with great interest on Thursday and Friday and must admit I found it ok, yes there were times where they could have changed a few words around, to explain TS slightly better but it is the media so what else can you expect. But hey it has given me the perfect opportunity to promote the site and it is working I am getting new people hitting it everyday and people have even made contact..... so that's all cool. I have emailed Close Up and Good Morning, and offered to talk to them about TS.

Chris's meds we are still fiddling with, on the weekends, he does not get the extra Rubifen and on the days he has school (his tech. classes)he gets 10mgs and the other days 5 mgs, I have also been giving him the Rubifen about 8.15am and that means we are ready for school or correspondence work they have kicked in nicely, certainly a huge difference between the 5mgs and 10mgs so will proberly stay with that and like I said before add the tic med.

His tics are still there, no verbal tics actually well very few, every now and then they just pop out a few times a day but nothing major, though right now he is having lot and lots of facial tics, especially in his eyes not good when he has Keratoconus. Oh well only 3 weeks till we go back to the psyc. doctor.

Oh yeah had the most wonderful moment the other night, Steph had a friend over and usually this is dynamite for Chris annoying them etc, but since being on the Concerta the nights have been bliss we are not getting those real highs and lows, anyway he was in there playing with them about 8pm and I kept checking (Yeah habit) but Steph his sister kept saying Mum Chris is fine he is playing really nice with us. I was so happy and in all honesty can not ever remember a time at night when he would play with the the girls nicely before. And this I can thank the Concerta for, so if you are having trouble with Ritalin etc with the extreme highs and lows I recommend you give this a try. I know it wont work for everyone, but hey for us it is nearly perfect.

Anyway no kids so going to go and mow the lawns and do the gardens Yeah NOT!!!!!~!

I read in another blog

2007-03-20T21:01:00.000+12:00

from someone who has Tourettes and loved it..... so thought I would post parts of it here. To check out his/her journal click here and the post is called "So Not Funny".

"I live with the social stigma nearly every day. As much as I hate to admit it, there is a common social stigma that people who twitch are crazy.
I often feel like I'm trapped in a broken body. I can't get it to stop twitching. I can suppress the urge to twitch for a short while, but I can't stop it. If I suppress it, then I only wind up twitching all the harder later and it winds up being so much more painful, and I already live in constant discomfort from it. I have trouble sleeping, many nights, because my leg won't stop "popping."
Upon learning that I have Tourette's Syndrome, most people ask the inevitable, "Oh, the disease that makes you curse?" Very rarely do they say "condition." Most of the time, it's "disease." I usually try to explain calmly that very few individuals with Tourette's actually curse. Everybody has different symptoms. It just so happens that the popular media loves to focus in on the things that cause a stir, that get attention, that make money from sensationalism. The public gets a good laugh, the media make a little money, and I get gawked at."

Well the guy for Shorty Street gets introduced on Thursday night......

Cheers :)

Shortland Street and Tourette Syndrome

2007-03-18T20:11:00.001+12:00

Shortland Street's new character has Tourette Syndrome - click here to read about it. I must admit to be being very nervous about this character as in the introduction on the Shortland Street page they introduce TS as "Angus Phelps (Elliot Christensen-Yule) is no ordinary teen. He suffers from Tourette's syndrome, an inherited neurological disorder with symptoms that include involuntary movements and swearing". Now what I have issues with is 1 word "swearing" The truth is less that 10% of people with TS have coprolalia so why not say the truth Angus Phelps (Elliot Christensen-Yule) is no ordinary teen. He suffers from Tourette's syndrome, an inherited neurological disorder with symptoms that include involuntary movements and sounds. Easy as change the word swearing to sounds.

Ok that's it for now but I am sure I will be back.......

Saturday

2007-03-17T18:49:00.000+13:00

Had our visit with the psychiatrist yesterday and looked at our options we came up with 3 of them.

1) Keep the meds we are on and add the Rubifen which works well, but that would mean we would need to add a tic med.....
2)Take him of the OCD med and try him on Strattera and then reintroduce the OCD med as to do them both together is to tricky while introducing Strattera
3)Trial him on a Dextromphetamine type med - which I think is like sister med of stimulants.

After a lot of discussion with Chrs we have more than likely decided to stay as we are and add the tic med as the Concerta is fantastic for him and us. Chris is happy with this as he loves the Concerta as well. I will discuss this option with the psychologist on Tuesday.

The reason we are hesitant about number 2 is because last time we took Chris of the OCD med his life and our life were hell. He was vomiting daily from anxiety, we could not even look at him on the dinner table without him gagging, Strattera has to be introduced slowly and it could take a few months before we get the right dose, and I am not sure either if us could cope with that again. And as for number 3 I think basically the med is Speed - but need to research it more. But then again I suppose they are all as bad as each other in the long run.

One thing I do know is that Chris is so much more settled on meds........ We go back in 4 weeks so have some time to discuss out options.

Anyway thats our update

One of those days

2007-03-14T10:33:00.000+13:00

Wednesday
Ever have one of those days you wish you could just snuggle in bed all day well today is one of them for me. Today being Wednesday Chris's teacher turned up and talk about not being on task GGGGRRRRRRRR. I have no idea why we had two great days and today it has all turned to custard. It seems the added 10 mgs of the Rubifen has increased the tics, he has this horrible breathing one back which freaks me out it is like he is gasping for breath. I am not sure what to do - maybe he is just feeling under the weather.
Thursday
Well have made a decision to stop the added Rubifen as his tics were even worse today, and his focus was not much better so we talked about it and decided no Rubifen tomorrow. We managed to get an appointment with the psychiatrist tomorrow as they had a cancellation to discuss what if anything we can do different. Why does he have to have TS plus why can't he just have ADHD or TS........ I mean the ADHD meds work great and I don't want to give them up and we know that Chris can handle stim meds up to 40 mgs before his tics get worse, so we need to work around that. Today the poor kid was sweating and hot because he was continuously ticcing. I was doing some research on the net today re: meds and have found that concerta is tri released and 22% gets released first which means 22% of a 36 mg tab means he is only getting approx. 9 mgs in the am, whereas before he was getting 30mgs on the Ritalin in the morning and 10mgs in the afternoon, so this would explain why he is not focussed etc in the morning...........

If anyone out there has any ideas re: meds leave me a message, I would so love to know what has worked for others. I am really wondering if it is worth trying Strattera again.

Anyway catch you all tomorrow after the pdoc appointment.

March 2007

2007-03-13T20:48:00.000+13:00

Chris had started Concerta about 3 weeks ago, as we found the Ritalin/Rubifin combination was just not working, there were to many highs and lows throughout the day, this did not make a happy household. Anyway the Concerta is working fantastic especially once it kicks in about 11am, before that he was easily distracted etc, so we went back to the psychiatrist last week, and have added Rubifen (quick release) as from yesterday, what a difference, the school work has been bliss....

Ok I suppose I should do a bit of an update where we are at before I babble on to much.

Chris is currently tri enrolled, under the Northern Hospital School, Correspondence School and the local Intermediate. He has a teacher from the hospital school that comes once a week for an hour or so, and she brings the correspondence stuff - he is also going 3 hours a week to the local intermediate for technology classes, I currently go along as his teacher aid. We are just about to put in applications for a part time teacher aid for Chris so he can attend school more regularly rather than me go with him. But anyone who has dealt with GSE (Group Special Ed) know what a battle that is, and it is even harder to get funding if your child comes under Mental Health or Neurological. We pulled him out of school nearly a year ago, due to his OCD and getting teased and bullied at school for his tics. I certainly wont forget the nights after nights we had this time last year with the tears and hating life so much he did not want to be here. I also wont forget the time he came home from school with a bleeding mouth where some little punks smacked him in the mouth.

Chris is currently on meds for his OCD and ADHD, (this is our decision so please respect it) and is on Fluxotine, Concerta, and Rubifen. We had tried him on meds for his tics but the side effects outweighed the benefit of the meds so was soon off them. He is under CAMHS (Child Adolescent Mental Health Services) which I have to say have been fantastic.

In 12 months Chris has come along way - I now see a kid that smiles again, and plays jokes on us all the time, and is actually enjoying life. He has started horse riding. and loves it, I can't help but shed a quiet tear when I see him on the horse and a smile so huge........... Steph his twin also does horse riding and loves it to which is great. He loves being home doing correspondence school, he bought himself some mice which he adores....... he also loves home, because he can tic to his hearts content and know no-one will laugh at him.

Right now he feels safe and this is a great place to be, but life will not always supply a safe place for him, so we need to start SLOWLY taking him out of his comfort zone, and I say slowly as I do not want him to go back to the kid he was a year ago. So this journal will continue from now where I will be discussing the ups and downs.

Here we are

2007-03-13T19:59:00.001+13:00

Ok I was going to discontinue this personal blog but had a few people ask me where it went so it is back - I will not go into to much detail here about our story as it can all be found here. So go check it out.