Thankyou for all your imput, it means so much to know we have somewhere to go when things are tough. We haven't been posting for a while because life has been busy. Just to update we had our appointment at Great Ormond Street which was the worst experience ever. We arrived at 10.10 am as asked we had 1st test at 2pm. There is nothing for 12 year old kids to do there (really bad) finally saw specialist who was running very late and we had 10 mins with her. She did apologise but went on to say she couldn't give diagnosis there and then which is what would usually have been done. We then had second test and left at 4pm. What a day, from there we had a visit from school welfare looming and so we needed medical evidence to proove absenses were justified. I phoned after 2 weeks only to find out they send off reports to India to be typed (doc uses dictaphone) and then they are sent back. The 1st one was lost and so rather than do a hard copy here they sent it off again. To cut a long story short he was diagnosed with Benigh Paroxysmal childhood of vertigo.
Moving on we had welfare come and yes we were threatened with court(bring it on is what I say). Saturday gone we get the report from community paediatrician who we saw beginning of October. In his report he lists Jacks diagnosis as overgrowth syndrome,( I wonder if everyone with weight gain has a syndrome) developmental co-ordination disorder (Dyspraxia in old money) with educational difficulties. It gets even better, we changed our G.P a few weeks ago and thank heavens we did. The report states tha a telephone converversation with our G.P at the time took place. In the report it states and I quote, Dr******* described Jack as a strange child who has hypotonia and hypermobility with no explained genetic reason. Well!! I was chomping at the bit, they always arrive on a Saturday. How dare he!!! Any suggestions on how to deal with this would be much appreciated. It gets better though at the back of the report it states, at last and I quoteProviding his tests at G.O.S.H are normal(which they were not) I shall not be arranging any further tests however in veiw of Jacks Thyroid function test(TSH level of5.3) being slightly outside the normal range, I will request Dr*** to repeat the test but it is extremely unlikely that only a small rise in TSH level with normal thyroid hormone level would contribute to Jacks symptoms. His test results were TSH 3.3 range 0.4-5 and free T4 13 range 9-19 a week later test repeated an it was TSH 5.3 T4 12. What can I say, he is out of school and we are trying to get school to agree to Statuatory assessment for a small school near us which has a hollistic approach but we are struggling. We have a multi-proffesionals meeting on the 8 November. What a month, i'm exhausted but being angry is keeping us going. I can't imagine what it must be like to have Thyroid problems and fight for yourselves, I am finding it hard but I don't have the problems Jack has. Fair play to you all and just keep going !!!!! X