Tics getting increasingly bad at the moment. Ben horrible eye tics that trigger off his loud shouts and neck tic. Very distressed this evening. Last night 3 hours of tics keeping him awake. Thank goodness not tonight, about 1/2 hour but he was so exhausted sleep just took over.
Joe's leg kicking tic back with a vengeance - he too very upset and distressed.
Despite the tics getting worse as they always do this time of year, they are still managing some school. Not every day, and not necessarily full days but so much better than the last 4 years at this time.
School are being very flexible and it is really helping.
They have a personalised timetable as they are not getting into many lessons at the moment. They agreed today to add PE daily as this is something Joe in particular enjoys, and it may help him to get in on the more difficult days. Knowing he has something lighthearted to do on a particularly academic day can make all the difference. Ben too likes his 1:1 PE, which is no mean feat as its not his favourite thing. Cooking & gardening will also be introduced periodically to add some interest.
New 'progress' classroom being built so the boys will have a proper classroom environment to work in when not in class. This is just fantastic, other children at the school will benefit from this too. Not just children with TS but other children with different needs. This will make it much more sociable for them all to work together and to understand each other. As time goes on and tics get better the boys will hopefully get back into class more and be able to make some friends.
Friends are being made but it is very slow and difficult as they are not in class. School are also very aware of this and manufacture situations to enable them to be with one or two children they have already started making friendships with.
So, difficult days, but all good on the school front.
This is a very unusual story Im sad to say, as many families with TS children going through the school system are having a lot of difficulties right now. Lack of understanding and willingness to think outside the box, lack of funding for additional support.
I am very very grateful for our situation right now.
Thursday 9 February 2012
Friday 3 February 2012
Curious.....
Today I was made a ware of a peculiar situation in America.
15 Teenagers at one school have gone down with TS like symptoms, on top of that another 2 teenagers of the same age in a town nearby have developed it too. Whilst watching a youtube video of one of the brave teenagers she had written a comment by it to say that a lady in her town has now also developed these symptoms. How odd is that? No one is saying its definately tourettes because its too soon to say, but watching her video it looks to me like TS. Now, she could be unfortunate and have developed it, it happens at that age too. But 15 of them? Unlikely I would say.
Seems from the article that the school is built on a site where there was a large chemical spill back in the 70s and Erin Brokevitch is on the case. Remember the film? She has tested the land for contamination. The other area she is looking into is vaccine as all the teenagers are local and are the same age.
This led me to thinking about the boys, when they had their MRI injection. Ben had a dreadful reaction and within an hour or so started screaming and wouldnt stop. This was very unlike him, he was a placid happy baby. Wthin a couple of hours he had purple spots all over his legs and torso that were exactly like the melangitis spots. He ended up in hospital over the weekend for observation. He was tested for melangitis but it was negative. They told me this could not possibly be a reaction to the vaccine. Oh no? one hell of a blooming co-incidence wouldnt you say ! Over the coming weeks these spots would appear and disappear but there were always a handful of them on his body. Joe also developed these spots too. they had a couple of blood tests. No one knew what they were or why they were coming up. Well Im pretty sure I know why - it was the vaccine - which part of it, who knows. But its too much of a co-incidence that they had the melangitis vaccine at the same time.
Now, another TS mum I speak to said her son, (doesnt have TS incidently) but does have ADHD and OCD had a severe reaction in the doctors surgery to the MRI jab and had to have emergency treatment there and then and was rushed to hospital.
We both feel that whenever we have been to appointments and have had to fill out forms re the boys history, or discussed it, that these events are skirted over. I tried to push the point once with the consultant but it was just ignored.
I absolutely believe there to be a link. the boys were also premature as were a lot of other children with TS and other disorders. Perhaps they are just not developed enough to have these vaccines.
I am going to labour this point when I next see the consultant and ask what research has been done. My gut feeling is none.
I am going to be very interested to see the findings of the teenagers in the states because the other thing I have felt since the boys developed TS was that it could be down to environmental factors. There are so many chemicals used inside the house and outside the home.
Its a fact that some childrens and adults tics get worse when they go swimming due to the chlorine. Another friends little boy could not go near new carpet as the chemicals that the carpet was treated with sent him into having tic attacks.
I am going to do some searching over the coming weeks to see what research if any has been done in these areas.
I am going to see if I can track down Erin Brokevitch's website and send her an email about the vaccine experience.
If I find out anything interesting i will update this post.
15 Teenagers at one school have gone down with TS like symptoms, on top of that another 2 teenagers of the same age in a town nearby have developed it too. Whilst watching a youtube video of one of the brave teenagers she had written a comment by it to say that a lady in her town has now also developed these symptoms. How odd is that? No one is saying its definately tourettes because its too soon to say, but watching her video it looks to me like TS. Now, she could be unfortunate and have developed it, it happens at that age too. But 15 of them? Unlikely I would say.
Seems from the article that the school is built on a site where there was a large chemical spill back in the 70s and Erin Brokevitch is on the case. Remember the film? She has tested the land for contamination. The other area she is looking into is vaccine as all the teenagers are local and are the same age.
This led me to thinking about the boys, when they had their MRI injection. Ben had a dreadful reaction and within an hour or so started screaming and wouldnt stop. This was very unlike him, he was a placid happy baby. Wthin a couple of hours he had purple spots all over his legs and torso that were exactly like the melangitis spots. He ended up in hospital over the weekend for observation. He was tested for melangitis but it was negative. They told me this could not possibly be a reaction to the vaccine. Oh no? one hell of a blooming co-incidence wouldnt you say ! Over the coming weeks these spots would appear and disappear but there were always a handful of them on his body. Joe also developed these spots too. they had a couple of blood tests. No one knew what they were or why they were coming up. Well Im pretty sure I know why - it was the vaccine - which part of it, who knows. But its too much of a co-incidence that they had the melangitis vaccine at the same time.
Now, another TS mum I speak to said her son, (doesnt have TS incidently) but does have ADHD and OCD had a severe reaction in the doctors surgery to the MRI jab and had to have emergency treatment there and then and was rushed to hospital.
We both feel that whenever we have been to appointments and have had to fill out forms re the boys history, or discussed it, that these events are skirted over. I tried to push the point once with the consultant but it was just ignored.
I absolutely believe there to be a link. the boys were also premature as were a lot of other children with TS and other disorders. Perhaps they are just not developed enough to have these vaccines.
I am going to labour this point when I next see the consultant and ask what research has been done. My gut feeling is none.
I am going to be very interested to see the findings of the teenagers in the states because the other thing I have felt since the boys developed TS was that it could be down to environmental factors. There are so many chemicals used inside the house and outside the home.
Its a fact that some childrens and adults tics get worse when they go swimming due to the chlorine. Another friends little boy could not go near new carpet as the chemicals that the carpet was treated with sent him into having tic attacks.
I am going to do some searching over the coming weeks to see what research if any has been done in these areas.
I am going to see if I can track down Erin Brokevitch's website and send her an email about the vaccine experience.
If I find out anything interesting i will update this post.
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