Chronic Pain

Dealing with Chronic Pain is tough especially been a 13 year old.

Since the summer and a change in schools, massive growth spurt which is still carry on and a horrid virus Rachel has been left with Chronic Pain.  With in the last few months she has had many GP appointments, resulting in X-rays, blood been taken etc and spells on the Children’s Assessment Ward even an appointment with Rheumatology.  All test have come back clear and left us if confusion and worry.  Rheumatology referred us to  Nuffield Hospital in Oxford and that has to be one of the best things.

After our first appointment it is believed Rachel has Chronic Pain, which doesn’t show up on any tests but thats not to say the pain isn’t real.  As the doctor explain it, it isn’t a hardware problem which would show up in tests but a software problem which won’t show up on tests.  Finally someone who understood and believed what Rachel was going through and we are parents didn’t feel fobbed off.

Rachel and ourselves attended a pain class today at Nuffield, to understand more about the condition,  I have to say the statistics are scary, Chronic Pain is more common in girls than boys and is so common, in a average secondary school about 10% of children have Chronic Pain and yet doctors struggle to diagnose it and children are pass to different doctors to find out what their symptoms are.  Doctors have a lack of information on the illness where they know all the signs of something as serious as Diabetes they don’t have that same knowledge of Chronic Pain and yet Chronic Pain is more common in children than Diabetes.   More research needs to be carried out in Chronic Pain to understand more the cause and why some children suffer and others don’t and what can be done to help that children, maybe even adults.  As for children it isn’t as simple as taking a pain relief tablet, as even the strongest of tablets won’t help.   While this is great for acute pain it doesn’t help on Chronic Pain, with all signal’s been mixed up.  Physio and OT along with seeing a doctors will help to resume a normal life and take baby steps on the way back to normality.  Rachel starts these appointments in March and we can only hope that slowly they begin to work for her.

The heartbreaking fact of today was the amount of girls in the class today, all with different types of pain and all with different stories to tell but all looking to ease the horrendous pain they are in all day everyday.   But with all the facts and advice today and the steps to help moved forward, we know its a long road to recovery and more importantly for all those girls there today, they were believed and not made to feel as some other doctors have that their pain doesn’t exist that it is all in the heads.

Remember to try and stay positive and that everything your going through is real.

 

Lets hope in the future more support and research is available for this to become ore known to doctors and more support is available in the form of classes today and special clinics.

 

x

ECH Plan and School

So after thinking about things a lot more, I have started to look into the Governments website and look more into ECH Plans after seeing a link on social media and knowing you can apply for them yourself, all be it, it would be hard work.

I have started a word document which out lines my concerns and what I want to discuss with school and what I would like them to help with.

Does anyone know if there is a plan/formal support option before a ECH Plan and Statement of Special Needs the same thing or are they different ?

I am thinking of listing my concerns in detail for our meeting we are hopping for  and then I can give school a copy and help me stay on track.

I’m scared school will think why now ?  but then the last 2 years he has had great support and I have already been in this year to be palmed off, now I have to toughen up and not be palmed off and fight my corner.

Wish me luck x

Football and a escape.

Oliver’s obsession is football and a life saver I have to say,  If he’s having a bad day or a bad five minutes then off we go for a walk with a ball at his feet come rain or shine.  Even a pack of football cards can do the trick or watching a match on the TV.

The football cards are a great treat for him coping with the food shop too, as the smells and noise can cause issues or rude people, who like to bang their trolly into you or push you out the way to get somewhere.    Again Oliver can mainly hold it together in the store and it will all hit him once home but if you have the cards then as soon as we come in he takes his cards to his room and gets lost in looking through them and placing them in their folder allowing him time to calm down and re focus and forget about the shopping.

Mobile phones and twitter, the fact Reading FC have a running commentating on their games on twitter means if you have to go to town which again Oliver doesn’t like unless its a sports shop due to sensory issues a child with ASD and ADHD would have, it helps to keep him calm and safe as he can stop every now and again and check the score or whats happening in the game, and then we can carry on the shopping trip and Oliver will discuss what he’s just read meaning he isn’t noticing the shopping trip as he is in his own safe world while doing it.

Football clubs, again a life saver, after a bad day at school Oliver will come home and struggle through homework to then be getting ready to go to football club were for an hour or and hour and a half he can be lost in the skills being taught the games being played.  It also helps run off his excess ADHD energy.  It also gives him something else to focus on once home because he can then tell you all about his training session.

Fifa 17 is there for when you can’t take him out with a ball at his feet or he doesn’t have training on, even tho I limited his computer time as so he doesn’t spend all spare time on it.  It again helps him escape and once he’s finished playing he will tell you the score or his team in such a happy carefree way.

Football even effects clothing, Oliver only wears football tops, shorts and jogging bottoms, he will wear jeans on a very special occasion but normal times nope.   Over the years he’s had normal t-shirts etc but he seems to not wear them preferring the football tops I’m guessing with the ASD this is a sensory issue ?  He does wear his school uniform but as soon as he’s home it is off and I guess he has learnt that it has to be worn and he’s got use to the route of wearing it.

Even SKY sports news and any football matches help, when its transfer window you know about it as that is all he talks about.  But on a serious note when he is upset or angry then football helps so much if you talk about anything to do with football then and let him lead the conversation it can calm him down and once a little calmer allow him to explain what has happened to make him so angry or upset and then you can talk more about football allowing him to calm down again before you can carry on the conversation or let him know what plan you are putting into place to help him, this is also where the football at his feet helps as while he is playing he is calming down enough to explain things to you and then you being able to sort them out for him.

 

So thank  you football for being Oliver’s obsession being  his life saver being his safe world.

 

x

 

When life gives you lemons!

When life gives you lemons fight back and make Lemonade!

 

So at recent CAMHs appointments and other I have been asked if Oliver has an ECH plan, nope he doesn’t!  Why ?  Well Oliver holds it all together at school and on their creditors (reward system) he is in the top 10 for his whole year (about 120 children) He is wonderful at school and they don’t see any issues.

Oliver explodes once he is home from school where he feels safe and isn’t judged, of course of things are really bad the I email in to school, some times getting a reply and sometimes not.

With half term now up on us and Oliver having a chance to decompress I am on a mission to fight back with school.  Will I get anywhere who knows but I have massive issues.

So I guess this blog is for me to get my head around what I would want for Oliver what are the issues and what I have done so far !

So Oliver has been at this school for 2 and a 1/2 years and in the low years (KS2) he had amazing teachers who understood the issues and supported him,  KS3 he has lots of different teachers and they don’t understand him.  When I went in at the start of term I was given a quick 20 minute meeting to be told they have no concerns and my concerns were they have seen and worked with worst.

Oliver’s handwriting is awful, I can’t read it and he has been told by his science teacher she is unable to read it and he has to do something else when the others are writing, how is that helping  ?  This was one of my concerns at the start of the year which according to the SENCO and his tutor isn’t an issue?  I have to teach him touch typing for them to think about allowing him a computer in school.  I would work on hand writing at home like we have done before under his good teachers but nothing has come home to help us.

Teachers haven’t understood his condition resulting in me emailing in, which one email I had a reply the other ignored and both ignored by the SENCO.

So how do I get and ECH plan when they think nothing is wrong, how do I get the support for handwriting when they’ve seen worst?

A email has gone into school requesting a meeting I believe I need to sit down and come up with my concerns and Oliver’s and see what happens and maybe ask CAMHs to help.

I am not the only parent who has had issues with school and the SENCO.

What would you suggest to help or advise?

 

I shall keep you posted x