Chris's Story - updated March 09
On the 28th September 1995 the twins were born 5 weeks early. They spent 5 days in Special Care and then a couple more days in hospital then home.
Chris has had a few issues in his life, thank god nothing life threatening, but still things that have bought some stress to the family. He seemed a fairly healthy normal baby/toddler and nothing seemed to much out of place for the first few years.
At a few months old we found out he had Urinary Reflux they ran the dye through him and said he did not need surgery but placed him on antibiotics for about 2 years. This cleared up the problem.
At about age 2 he started to get Croup/Asthma this lasted for many years actually right through till he was 10 years old, now he has mild Asthma and has not had Croup for about 18 months.
At about age 4 1/2 he started getting this limp at first we thought he must have pulled a muscle, went to get x-rays nothing showed so didn't get to worried, 6 months later the limp was still there, and by this time I had been to 3 specialists who basically told me I was a paranoid mum and there was nothing wrong. Anyway one day he came home from school and could not walk, so took him back to the local doctor, where there just happened to be a young Paediatrician on who knew about Perthes Disease, I told him the symptoms and he took some x-rays of the hip and 30 minutes later we had the diagnosis and 1 hour later we were at Starship. We were sent home with a pair of crutches and put on a waiting list for a wheelchair. We got him a wheelchair and for the next 2 1/2 years he spent nearly all his time in the wheelchair and on the crutches. Basically he lived of Pamol and Brufen all this time. He missed many days/weeks of school due to the pain and was put on bed rest. We started swimming/therapy 5 -6 days a week for 3 years. This kept his Range of Movement good - therefore avoiding surgery. He had full head involvement and was classified as Herring C. 8 years on and we are still having yearly check ups and he still has pain occasionally hip is not looking to bad all in all but did think by now we would have been finished on this journey of Perthes but not quite.
It was at the beginning stages of Perthes when he also started having regular Night terrors this seemed to be associated with pain - again these lasted for many years in fact right up to the age of 10 1/2 years old. It was also at this stage about age 5 we first noticed the tics - the first one was a neck jerk where he would jerk his neck back, and he also used to pick things up and sniff them, these were the only 2 that we noticed for a long time - but the more I learn about TS the more tics I realise Chris had and I just never knew they were tics, always thought they were just part of his unusual personality (and I say that in a nice way). Actually I remember going to a chiropractor about his neck jerking (thinking it was his back causing the problem) and he suggesting tics, I remember coming home and reading about tics on the net and thinking never. My son does not have tics or TS. Back then I had no idea they were tics and just put it down to pain with the hip, as it got worse on the days/nights he was in the most pain. This carried on for many years with a few other things which will come to me in a few days I am sure and will add it then LOL.
At the age of 7 years old he was in a great class at school and with another boy and girl and they shared a teacher aid. This was the year that we discovered he needed glasses thanks to the teacher aid and also she suggested we get him tested for Dyslexia . So we went through SPELD where they told us yes he did have Dyslexia. So we then went for private tutoring 1 time a week under SPELD which was great for him.
At age 8 he also had to have surgery on his nose, he had a cyst on it, and they had to remove it. It was right smack bang on the tip of his nose.
By this stage we knew something was not quite right for Chris, he seemed different to most kids but could not quite place where or what. School was not a happy place for Chris in fact he hated it, we then shifted him to another school as the class they were going to place him in for the following year was not appropriate. In hindsight it was probably not the best decision - he was there for 1 year and then I left my ex and moved to Taupo as we had a home there, to try and figure out where our marriage was heading. This was the first school he loved he had a couple of good friends. My mother also passed away that year and my ex and I decided to split up.
We went for our yearly eye check up at age 10 where they told us that he had Keratoconus in both his eyes.... for now glasses will do but long term we are not sure if he will need Cornea grafts.
With the stress of moving and his "Oma" dying and his father and I splitting up Chris changed, it was then we got the ADHD diagnosis in 2005 (Thanks to a couple of friends telling me I needed to get him and us help) - having said that the behaviors were always there but they seemed to have increased. We started him on Ritalin and this was our life saver, he was like a different kid....... well the same kid, but so much more focused.
Because of the split and only having a 2 bedroom house in Taupo we decided to move to Tauranga in 2005 to be closer to friends and family - this was such a hard decision as Chris was quite settled at school, and even now I wonder if I had made the right decision. Moving to Tauranga also meant we had better access to CAMHS (Child Adolescent Mental Heath Services). Chris is under CAMHS where we see the psychologist and psychiatrist regularly.
This brings us on to 2005/06. Chris has always had OCD (Obsessive Compulsive Disorder) issues but nothing to major, things we could work around ok and a bit like the tics they were there but not to much to worry about. We got the diagnosis of OCD in 2006 - his is all germ related OCD well most of it, but this seems to be changing lately, his tics also have got much worse this year as well, we wondered if it was the Ritalin so took him of it, and the tics did not go away and the benefits from the Ritalin was to good so we started up on that again. By this stage his OCD was controlling him and was unable to function at school, and his tics were getting extreme. He was having both verbal and motor tics. He also got a diagnosis of Aspergers. We pulled him out of school and are currently doing correspondence with him at home through high health needs. He loves it. He was also placed on Fluxotine for this, even though it did not help the OCD as much his anxiety was a lot better and he was no longer vomiting daily. We also started him on Risperidal for the tics, but he gained a lot of weight in a short period of time and it also seemed to make his OCD worse, so we stopped it again.
2007
In 2007 we are still doing correspondence with Chris and hope to maybe have him go to school part time some time this year. His OCD is extreme and his Tourettes are bad..... Right now he has very obvious motor tics and also loud verbal tics. It could be because he is hitting puberty and everything is peaking but time will tell.
March 2007
Chris has been to school a couple of times doing technology with me. He has also started horse riding lessons which he loves, it is so nice to see him smile when riding.
We are in the process of doing all the paperwork for GSE (Group Special Education) and getting the RTLB involved to see if we can get any funding for teacher aid hours for Chris - wish me luck this will not be an easy battle. But I am ready to fight
They have had a meeting re: Chris and things are looking pretty good there - will update when things are confirmed.
We have started him on Concerta for his ADHD as we were finding the RitalinSR was causing him to have extreme highs and lows. The Concerta is working a treat except it is taking a while to kick in so we have added Rubifen in the morning which is also working a treat except this has caused the tics to increase - so we go back to the psychiatrist in early April and I think we will be adding a tic med to the combination, as we don't want to give up the Concerta.
March 2009
An update for those not following the blog - Chris is now going to school full time, he is in the special needs unit at Otumoetai College which he loves, he does mainstream Maths/English/Tech with a teacher aid, I can not rate this unit highly enough the staff are awesome. A lot has changed with his meds he is now on an anti psychotic for his mood swings which have stabilised him heaps and also still on the antidepressant for his OCD. Finally for the first time in years things are looking really positive. Another bit of exciting news is that Attitude TV is coming in a couple of weeks to do a story on Chris, this will be a positive story and am really pleased we have the opportunity to tell our story, if it makes one person understand mental and neurological issues in children/teens then it will all be worth it, we can only educate the public by presenting our stories. Don't get me wrong we have had some rough times over the last 2 years, with self harming and the education system letting us down etc but with support from Child Adolescent Mental Health we have and will make it through, another agency I could not be without. For more in depth updates check out the blog.
He also did the Special Olympics swimming a few weeks ago with the school and his relay team got a first and he got a second and third as well, we were all so proud of him and I even shed a tear.
Please for all you parents out there don't ever stop fighting for your children please, yes at times it all seems like to much but I look back now and after fighting the education system for years, and accepting outside help right now things for Chris could not be any better. Also on the main page I have contact details (near the bottom) please feel free to contact me at any time, and know you are not alone...
To follow our journey in a blog click here
Thanks for reading (If you made it to the bottom and I did not bore you all) - and I will keep adding to this probably monthly so come back and check.
On the 28th September 1995 the twins were born 5 weeks early. They spent 5 days in Special Care and then a couple more days in hospital then home.
Chris has had a few issues in his life, thank god nothing life threatening, but still things that have bought some stress to the family. He seemed a fairly healthy normal baby/toddler and nothing seemed to much out of place for the first few years.
At a few months old we found out he had Urinary Reflux they ran the dye through him and said he did not need surgery but placed him on antibiotics for about 2 years. This cleared up the problem.
At about age 2 he started to get Croup/Asthma this lasted for many years actually right through till he was 10 years old, now he has mild Asthma and has not had Croup for about 18 months.
At about age 4 1/2 he started getting this limp at first we thought he must have pulled a muscle, went to get x-rays nothing showed so didn't get to worried, 6 months later the limp was still there, and by this time I had been to 3 specialists who basically told me I was a paranoid mum and there was nothing wrong. Anyway one day he came home from school and could not walk, so took him back to the local doctor, where there just happened to be a young Paediatrician on who knew about Perthes Disease, I told him the symptoms and he took some x-rays of the hip and 30 minutes later we had the diagnosis and 1 hour later we were at Starship. We were sent home with a pair of crutches and put on a waiting list for a wheelchair. We got him a wheelchair and for the next 2 1/2 years he spent nearly all his time in the wheelchair and on the crutches. Basically he lived of Pamol and Brufen all this time. He missed many days/weeks of school due to the pain and was put on bed rest. We started swimming/therapy 5 -6 days a week for 3 years. This kept his Range of Movement good - therefore avoiding surgery. He had full head involvement and was classified as Herring C. 8 years on and we are still having yearly check ups and he still has pain occasionally hip is not looking to bad all in all but did think by now we would have been finished on this journey of Perthes but not quite.
It was at the beginning stages of Perthes when he also started having regular Night terrors this seemed to be associated with pain - again these lasted for many years in fact right up to the age of 10 1/2 years old. It was also at this stage about age 5 we first noticed the tics - the first one was a neck jerk where he would jerk his neck back, and he also used to pick things up and sniff them, these were the only 2 that we noticed for a long time - but the more I learn about TS the more tics I realise Chris had and I just never knew they were tics, always thought they were just part of his unusual personality (and I say that in a nice way). Actually I remember going to a chiropractor about his neck jerking (thinking it was his back causing the problem) and he suggesting tics, I remember coming home and reading about tics on the net and thinking never. My son does not have tics or TS. Back then I had no idea they were tics and just put it down to pain with the hip, as it got worse on the days/nights he was in the most pain. This carried on for many years with a few other things which will come to me in a few days I am sure and will add it then LOL.
At the age of 7 years old he was in a great class at school and with another boy and girl and they shared a teacher aid. This was the year that we discovered he needed glasses thanks to the teacher aid and also she suggested we get him tested for Dyslexia . So we went through SPELD where they told us yes he did have Dyslexia. So we then went for private tutoring 1 time a week under SPELD which was great for him.
At age 8 he also had to have surgery on his nose, he had a cyst on it, and they had to remove it. It was right smack bang on the tip of his nose.
By this stage we knew something was not quite right for Chris, he seemed different to most kids but could not quite place where or what. School was not a happy place for Chris in fact he hated it, we then shifted him to another school as the class they were going to place him in for the following year was not appropriate. In hindsight it was probably not the best decision - he was there for 1 year and then I left my ex and moved to Taupo as we had a home there, to try and figure out where our marriage was heading. This was the first school he loved he had a couple of good friends. My mother also passed away that year and my ex and I decided to split up.
We went for our yearly eye check up at age 10 where they told us that he had Keratoconus in both his eyes.... for now glasses will do but long term we are not sure if he will need Cornea grafts.
With the stress of moving and his "Oma" dying and his father and I splitting up Chris changed, it was then we got the ADHD diagnosis in 2005 (Thanks to a couple of friends telling me I needed to get him and us help) - having said that the behaviors were always there but they seemed to have increased. We started him on Ritalin and this was our life saver, he was like a different kid....... well the same kid, but so much more focused.
Because of the split and only having a 2 bedroom house in Taupo we decided to move to Tauranga in 2005 to be closer to friends and family - this was such a hard decision as Chris was quite settled at school, and even now I wonder if I had made the right decision. Moving to Tauranga also meant we had better access to CAMHS (Child Adolescent Mental Heath Services). Chris is under CAMHS where we see the psychologist and psychiatrist regularly.
This brings us on to 2005/06. Chris has always had OCD (Obsessive Compulsive Disorder) issues but nothing to major, things we could work around ok and a bit like the tics they were there but not to much to worry about. We got the diagnosis of OCD in 2006 - his is all germ related OCD well most of it, but this seems to be changing lately, his tics also have got much worse this year as well, we wondered if it was the Ritalin so took him of it, and the tics did not go away and the benefits from the Ritalin was to good so we started up on that again. By this stage his OCD was controlling him and was unable to function at school, and his tics were getting extreme. He was having both verbal and motor tics. He also got a diagnosis of Aspergers. We pulled him out of school and are currently doing correspondence with him at home through high health needs. He loves it. He was also placed on Fluxotine for this, even though it did not help the OCD as much his anxiety was a lot better and he was no longer vomiting daily. We also started him on Risperidal for the tics, but he gained a lot of weight in a short period of time and it also seemed to make his OCD worse, so we stopped it again.
2007
In 2007 we are still doing correspondence with Chris and hope to maybe have him go to school part time some time this year. His OCD is extreme and his Tourettes are bad..... Right now he has very obvious motor tics and also loud verbal tics. It could be because he is hitting puberty and everything is peaking but time will tell.
March 2007
Chris has been to school a couple of times doing technology with me. He has also started horse riding lessons which he loves, it is so nice to see him smile when riding.
We are in the process of doing all the paperwork for GSE (Group Special Education) and getting the RTLB involved to see if we can get any funding for teacher aid hours for Chris - wish me luck this will not be an easy battle. But I am ready to fight
They have had a meeting re: Chris and things are looking pretty good there - will update when things are confirmed. We have started him on Concerta for his ADHD as we were finding the RitalinSR was causing him to have extreme highs and lows. The Concerta is working a treat except it is taking a while to kick in so we have added Rubifen in the morning which is also working a treat except this has caused the tics to increase - so we go back to the psychiatrist in early April and I think we will be adding a tic med to the combination, as we don't want to give up the Concerta.
March 2009
An update for those not following the blog - Chris is now going to school full time, he is in the special needs unit at Otumoetai College which he loves, he does mainstream Maths/English/Tech with a teacher aid, I can not rate this unit highly enough the staff are awesome. A lot has changed with his meds he is now on an anti psychotic for his mood swings which have stabilised him heaps and also still on the antidepressant for his OCD. Finally for the first time in years things are looking really positive. Another bit of exciting news is that Attitude TV is coming in a couple of weeks to do a story on Chris, this will be a positive story and am really pleased we have the opportunity to tell our story, if it makes one person understand mental and neurological issues in children/teens then it will all be worth it, we can only educate the public by presenting our stories. Don't get me wrong we have had some rough times over the last 2 years, with self harming and the education system letting us down etc but with support from Child Adolescent Mental Health we have and will make it through, another agency I could not be without. For more in depth updates check out the blog.
He also did the Special Olympics swimming a few weeks ago with the school and his relay team got a first and he got a second and third as well, we were all so proud of him and I even shed a tear.
Please for all you parents out there don't ever stop fighting for your children please, yes at times it all seems like to much but I look back now and after fighting the education system for years, and accepting outside help right now things for Chris could not be any better. Also on the main page I have contact details (near the bottom) please feel free to contact me at any time, and know you are not alone...
To follow our journey in a blog click here
Thanks for reading (If you made it to the bottom and I did not bore you all) - and I will keep adding to this probably monthly so come back and check.