12 years old and health and school issues

Our son has had issues all of his life but this came to head about 11 months ago when he started having dizzy spells at school, this resulted in an attendance level of 74% over this year. School would either send him home or we would keep him off. We were called in for a meeting with EWO and the result was a referral to the school nurse, school were quite clear in that they wouldn't authorise any more absenses without medical evidence.

Moving on our son was referred by GP to Paediatrician, paed sent him for 2 EEG's and hearing specialist. No bloods at this point had been done. This was now appx May time. We approached the summer hols and his condition got worst, he was playing on his bike out of the front of the house and I saw him go down when I looked at him he was deathly white, shiny, waxy and very unusually cold. I took his temperature and it was 93 f. I phoned NHS direct and they told me on his next attack if I couldn't get his temp up in 20mins I must 999 him to A&E. It took me 2 hours to raise his temp the first time( this must have been what was going on in school). The EEG's came back normal and we have Great Ormond Street in Oct. I then went on to pester the Paed for earlier appt(December was our next appt) he then struck us off for pestering his secretary. He asked us to keep a diary and I felt this was new and very relevant. I then went back to G.P who referred again, new appt with unknown on Oct 21st. By this time i'm angry, we went to A&E and sat for 2 hours waiting for his blood to be done. I then found thyroid uk and posted results etc on here. They are as follows TSH 3.3 freeT4 13, I was told these were normal, I then went back to G.P and asked for another test after help from red apple, the results were TSH 5.3 andT4 12. My G.P has said he feels it is unusual because people don't have symptoms until it reaches 10. He said we must wait for paediatrician in October. My son now aches in his legs, sleeps alot, has now gained 6lb in the last 2 weeks. The G.P says he is going to tell school nurse that he has to have someone medically trained with him at all times in school and not just a first aider. My biggest worry at the moment is managing his symptoms and the time it is taking to sort him out. Why are they so laid back about everything. I should say his anti-body test was normal. Any help you could give me would be really appreciated. Thankyou.

[JackStone]

Sorry to hear about your sons problems. The trouble with the NHS is that it does move at a very slow pace and that its often hard to make doctors listen to your concerns. The one very bright poart of your post is that you have been refered to Great Ormond Street. I know people who`s children go there for different problems to your sons and they have nothing but priase for the hospital. I am sure they will sort your sons problems out and soon get him back on the road to feeling great. good luck and hope your son is soon feeling better.

[Bunny]

I wish you luck with the school system, but at the risk of being negative without a abatement there is no chance he will get someone medically qualified with him in a school, because no one will pay for it sadly, not the school whose budget is strapped by the Govt and not by the Lea without a statement and to get a statement takes a minimum of over a year of evidence, meetings and paperwork gathering. Even children with statements don't have medically qualified staff with them but Teaching Assts supported by the schools Inclusion Manager and outside support tom Ed psych, Occ Health medical services if there is a clear diagnosis . If anything the Education system is a lot worse than the Nhs. But this is why your keeping a diary is si important...as you are the only ones gathering evidence at the moment.LEAs used to have someone called a Parent Partnership officer,he is an individual at the LE A who is independent of schools who can support parents in difficult circumstances to act as an advocate for parents and child.

Please note I am not saying anything about your sons condition..........but I've just emerged from over 20 years in teaching and am saddened at the way things have gone in that time......league tables, PR and funding seem to be the top of everyones list sadly in the vast majority of situations...oh and target setting.

You will have to keep your detailed hour by hour evidence and show it toGreat Ormond St.

<b>Updated on Sep 3 2010 11:36AM:</b> Sorry for typo ..should say without a statement ( of Educational needs).I would also add that the trend to give out Statements across the country has been greatly reduced over the last 20 years, well in the part of the Uk where I live, because theta commit and tie a Local Authority to funding ie paying for hours of support over and above that that every pupil gets as their legal entitlement. They are seen as a very very expensive way of meeting needs and Inclusion is the word everywhere ie a school can cope with all children regardless of ability, health race religion or behaviour. Special schools are a shrinking resource for a very small minority of children.