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.
Friday 30 March 2007
Saturday 24 March 2007
Saturday and no kids
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!!!!!~!
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!!!!!~!
Tuesday 20 March 2007
I read in another blog
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 :)
"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 :)
Sunday 18 March 2007
Shortland Street and Tourette Syndrome
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.......
Ok that's it for now but I am sure I will be back.......
Saturday 17 March 2007
Saturday
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
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
Wednesday 14 March 2007
One of those days
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.
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.
Tuesday 13 March 2007
March 2007
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.
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
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.
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